Tuesday, September 29, 2009

Already Out...

Hey Guys,

Well, I'm already missing class, which totally sucks.

My mom (who's been through this whole cancer thing before with Brian) had been worried that I wasn't getting bloodwork often enough. When Brian was on chemo and going to elementary school, his doctor had him get bloodwork ALL THE TIME to make sure that his counts were high enough to go to school. My mom and his nurse were able to track and predict when his counts would drop so that the school could give him his work ahead of time so he could keep up with his class (which worked out so well!)

Unfortunately, I hadn't been told to get bloodwork as often - my mom mentioned this to Debbie, who told her it was ok. However, when my mom sat down to track my counts so I could give some warning to my professors, she realized that I'd never gotten bloodwork done when my counts were dropping - only when they were rising. On an instinct, she sent me in herself to get bloodwork done this morning (since I have a standing order, I can basically go in whenever - there's no specific date on the paperwork). I wasn't expecting them to drop until Friday at the earliest, so I got up, showered, got dressed for class, ate breakfast, and stopped by the outpatient clinic.

aaaaand....drumroll.... my ANC was 450!!!!!! For those of you who don't know, it has to be 500 to go out in public, and normal is in the THOUSANDS. So... back home I went, and back into the sweats. I was excited, too, because I had a new dress I'd been wanting to wear to class (but that's beside the point...)

I'm disappoined because I was hoping my counts would be low over the weekend so I'd maybe only miss a day or so of class. Now it's looking like I might be missing the entire week! I'm crossing my fingers I'll be cool for Friday.

I guess this means I'll have more time to work on my research... or to watch movies...

Also, my mom's feeling a little under the weather, so I'm hoping she feels better soon! She hardly ever gets sick, but she does such a good job taking care of all of us that sometimes she needs us to take care of her!

Lots of Love,

Sunday, September 27, 2009

Surrounded by Britten

Hey Guys,

Yikes, I'm getting really bad at consistently posting!

Anyway, I've been SO happy to get back to class! It's really weird being at a new school, very disorienting. I keep telling myself that I really shouldn't be back to BW anyway (since I'm a fifth year...) and would most likely have been starting Grad school, but it's still weird being someplace new! Especially because I'm taking all upper-level classes with kids who have been together for the last two or three years. I'm the only "new kid"!

My French Civ class is interesting - I can't really figure out WHAT the heck the prof is talking about most of the time, and the class is even in English! I kind of think it's a forum for him to ramble on about his political views, but it's not going to be too much work (only two 1-page papers, a midterm, and a final) and it's all opinion-based, so I'm not too worried about anything but getting bored. Plus there are no windows in the room, so not even anything to distract myself with. The TA is cute, though... and French! He interjects occasionally when he can tell the prof. is getting off topic, so that helps a little bit...

I'm taking a French language course as well - I'm a French minor, so I've taken all the "Advanced" French classes, but I have to go back and take the 200 levels to get the credit for my minor (I skipped them when I was just taking French for fun...). The class I picked to transfer is all about food (I accidentally picked it! They gave me a choice of three courses that would transfer correctly and I picked the third in the series... lucky chance!) and my prof is AMAZING! She's this older French lady (maybe in her 60s?) and used to design lingerie for Victoria's Secret before going back to school, getting her master's in French Lit, and becoming a professor - she also was a professor in the Fashion Design dept. until a couple of years ago. Sooooo cooool! There's a girl in my class that I sit next to who's a Fashion Design major, and she was telling me about a design class for non-majors. She's bringing me some info about it tomorrow in class, and I'm hoping that I might be able to audit or sit in on the class - I've always wanted to take a design class, even though I can't sew or draw... I guess that's why you take class, though...

So far, though, my favorite class is my German Art Song class... It's taught by this tiny, tiny man who knows EVEYRTHING! He reminds me of Dr Strasser (at BW) - just a font of knowledge. We sit in the class (me and 60 voice grad majors - intimidating!) and he talks and we take notes. I'm extra happy that he's not making me sing, either (I wouldn't want to force the other singers to listen to my chemo voice right now!) so I just have to do written work, which isn't a problem for me since I'm not taking a full load of classes OR voice lessons!

I'm also taking an Orchestration class (required for my Music History degree) which I'm still not so sure about. I'm the only vocalist in the class (singers aren't required to take it unless they have a double major, like me) and I know NOTHING about instruments! I warned my professor, though, and she's been really kind and offered to help me out whenever I need it.

I've finally spent a lot of the past few days realllly sitting down and working on my thesis. This is going to (obviously) be a TON of work. I've got a few of my books all read and notated, and I have an EXTREMELY preliminary outline written (just so I have an idea of what to look for when I'm reading my books). My goal is to finish all the books in the next week or so and to have a better outline written by the end of October. Ideally, I'd like to start writing before I go back for the spring. I'm just worried that I'm not going in a good direction, and it's hard to work with my advisor via email! It would be SO much easier to sit down for an hour every week (like I'm supposed to be doing!) and get his advice face-to-face. I'm emailing him to see what I should do about that (maybe find an interim advisor here in Cincinnati?) but in the mean time, I'm slogging along through all of this Britten and Peter Grimes on my own. It's amazing, but overwhelming sometimes!

On a chemo note, I finished my FOURTH round of steroids tonight, which marks the end of my drugs for my fourth cycle! Woohoo! Only two more rounds to go, which means four more chemos, two more weeks of Procarbazine (which doesn't bother me much that I can tell), and four more weeks of steroids (which I HATE). I'm a little but nervous because my counts drop lower and faster with each round, and they've already started dropping according to the bloodwork I had this morning. I'm hoping they'll hold up until this weekend since I'm supposed to give a joint presentation in class on Friday, and I don't want to have to beg off a project already! I mean... I have a good excuse, but still! I had to wear a mask for the first time today - there were tons of sick kids at Outpatient (where I get my blood drawn) and they were all coughing all over the place... Fortunately, the nurses let me go wait for my lab tech in the ultrasound room so I wouldn't have to sit in the waiting room with the sick kids. Score one for being bald! Less exposure to Swine Flu...

Well, I promise I'll be back again soon. Hope you guys are all holding up well & avoiding H1N1!

Lots of Love,

@Jacinta - check out your last comment! I put a response in the right place this time!

Wednesday, September 23, 2009

Back to School - Finally...

Hey Guys!

Sorry it's been a little while since I posted - I had treatment on Monday and FINALLY got back to school today!

Monday's treatment went really smoothly - I didn't have to stay in a tiny infusion room like last time (although this time I wouldn't have minded - the treatment was only about an hour and a half, so I was basically only in Day Hosp. for three hours at the most!) My nurse was really fast, which made it soooo much easier - she came quickly when I buzzed for my med changes, and you wouldn't believe how much time builds up when you're just waiting for the nurse to get there to change the drugs!

Knock on wood, I've been feeling a lot better this round following my day 8 treatment than usual. I've basically got the nausea under control (thank GOD, since now I actually have to go to class & I can't spend all day sleeping because I'm feeling sick!) Everything tastes pretty crappy, though - I always forget how BAD the chemo makes my mouth taste for about a week or so after this treatment. I know I've mentioned it before, but just for a recap - sweet things taste like they're made with artificial sweetener (blegh) and everything else tastes fuzzy and sour. Except plain water, which is just not good. Even filtered water kind of tastes a little bit sewer-y (which I'm 99% sure is the chemo because normally we have pretty great water in Cincinnati... unlike my apartment in Berea!)

In the week or so before classes started, I decided to do some experimenting with my newly rediscovered crocheting skills and set about making some hats. My first attempt(s) were abysmal and actually pretty funny, but after a couple trial-and errors, I was able to make a couple that actually turned out pretty good!

This is my first successful attempt - you can't really tell, but the yarn I used is mostly a deep purple with some navy and teal running through it. It's SUPER silky, and I think it'll look really nice with the celery-colored pashmina scarf I have from Florence two summers ago, and also with the pink pea coat I found when I was cleaning out my closet (I don't even know when it's from! Middle school? Early high school? It's cute!)

This second one I made with yarn that I had originally bought to make a scarf for my mom - it's pinks and grays and some lavender, and the yarn is REALLY knobbly. I got the same kind of yarn in black, white, and gray also (I was going to make coordinating scarves for my parents) and tried to make a scarf for my dad out of it. However, I didn't buy nearly enough yarn of each color AND the knobbly-ness proved to be extremely hard to make an even scarf out of. So I ended up having to scrap the scarf for my dad, and used the pink yarn for my hat experiments. I think it turned out pretty well! It kind of looks like a bathing cap - my mom says I should crochet some little flowers to attach to the front, so that's probably going to be my next in-hospital crocheting adventure!

Also, check out my neck reallllly closely - you can barely even see my scar anymore! Woohoo! I've been putting lotion on it basically every day to make sure that it doesn't get too tight or itchy, but I'm pretty sure that the fact that my surgeon GLUED me back together has had a lot to do with the fact that it's healed so well and SO quickly! When I wear necklaces, you can't even tell it's there. And even when I'm not wearing one, you can really only see it if you're looking. It's not red or angry looking or anything.

In addition, I'm happy to report that I STILL have a full face of eyebrows and eyelashes, which THRILLS me! Of course, I'd be more than happy to wear crazy falsies everyday, but since I still have my eyebrows and eyelashes, people still think that I shaved my head on purpose. Since I'm starting at a new school, I'm pretty thrilled not to have that "cancer" look.

I'm heading out for some dinner, but I'm happy I was FINALLY able to stop back and get a post up. I really need to start doing this more regularly again!

Lots of Love,

ps to Jacinta - I posted a reply to the comment you left on my post from Aug. 27. I wasn't sure if blogger would alert you to a reply, so I wanted to let you know! Please feel MORE than free to ask any questions you'd like!

pps as a general note, if you guys ever ask me questions in comments, I'll definitely reply to them under the comment section. Blogger doesn't give access to email addresses, so if you've asked anything, always check back in the following days to see if I've posted a reply!

Saturday, September 19, 2009

Bad Moods

Hey Guys,

I've been getting pretty frustrated with myself lately. Throughout the entire first half of my treatment, I managed to stay really upbeat and positive about everything. Lately, however, that doesn't seem to be the case. I've been finding myself in bad moods pretty consistently, and getting frustrated with people who are only trying to help (especially in my family - I'm sorry to all of you guys!).

This is the most time I've spent at my parents' house since I left for college, and I think I'm starting to go a little stir-crazy without much to do, especially since most of my friends are up in Cleveland, and the few that ARE here actually have jobs - so it's hard to see them sometimes. Plus, my blood counts get lower and lower with each treatment, so I'm worrying about days when I can't really go out in public much (remember the meltdown I had when I was supposed to go up to Berea a few weeks ago??)

I'm hoping that when I start classes at UC on Wednesday, some of this will turn around. I'm not used to feeling so negative all the time! I think it's probably due to boredom - I can't seem to really get motivated to do anything that I normally would LOVE to be doing (namely, right now, researching and writing my thesis on a topic I'm super excited about...)

In better news, my mom finally convinced me to organize allll (or... at least most) of my clothes - a majority of my "winter" things are still living in my apartment, which I'll hopefully remember to bring home next time I visit the Cleveland area...

about half of my shoes (too many to fit in one organizer... yikes...)

my tiny closet - organized mostly by color (score one for good ideas)

my new rhinestone sandals... (I mentioned them in my Chicago post)
for some reason, the picture transferred sideways...

Also, my mom and I went today to visit my brother Andrew at Indiana University in Bloomington, IN. It's about a 2.5 hour drive from our house, and it's a really pretty ride through a lot of farms and small towns. We found a new restaurant that none of us had ever been to - it's called Roots, and it is completely vegetarian (or vegan, if you request your meal made that way) and I had some AMAZING polenta with pesto and steamed veggies... I wish I'd thought to take a picture, because it was sooo delicious and colorful.

In chemoland, I've been feeling pretty decent since my Monday treatment - some mild nausea and a few mouth sores, but mostly I've figured out a routine to keep that all under control (unless I do something stupid like forget to take my Kytril - which I did this morning! I'm glad I have my emergency tin of anti-nausea drugs in my purse!) The mouth sores don't suck nearly as much as they did during my first round. I get a little bit of soreness around the bottom and sides of my tongue, but mostly I just get a couple down my throat - which may sound worse, but is actually better since it just feels like having a sore throat.

Finally, I'm really looking forward to helping out with the musical at my little brother's high school (my old school...) They're putting on a production of Blood Brothers, by Willy Russell. Brian will be playing the part of Mr. Lyons - everyone in the Cincinnati area should come out and see him (he's an AMAZING singer!!!). You can contact the Anderson High School Theater Department for tickets (Nov. 19, 20, 21). We'd love to see as many of you there as possible!

Lots of Love,

ps posting this has already made me feel better :-)

Tuesday, September 15, 2009

Intermission's Over - Time for Act II

Hey Guys!

Sooooo let's see... Saturday was the Survivor's picnic at the Cincinnati Zoo, courtesy of Children's Hospital. I feel bad because I was feeling a little grumpy all day (I'm not sure why - I also felt like I was on painkillers or something, but definitely haven't taken any in awhile!)

Anyway, we were able to meet up with some of Brian's old friends from the Little Star Foundation trips he'd gone on to Aspen and San Diego. We also ran into Debbie, my nurse, and Sarah, who is the fellow who works with Dr. Adams. She brought her boyfriend with her (who she'd talked about before when she would come to check on me in the hospital) and he was really cute! They made a great couple together, and it was really nice to see her!

We walked around the zoo for a bit - I'd wanted to do more, but I was super tired for some reason - I think it was the anticipation of starting treatment again on Monday. We did get to see some monkeys, some flamingos, the white lions, and a variety of bears. My favorite, however, was the zoo babies - a baby cheetah which was SUPER adorable (and acted just like a regular cat!) and a baby bearcat. Honestly, I had no idea that the bearcat was a real animal - I thought it was just something UC had made up to sound intimidating!

Me & Brian in front of a fountain on the zoo lake
(I cracked a lens on my favorite sunglasses so I had to make do with Brian's old ones - which are a little big for me!)

The zoo always has beautiful landscaping, so my mom likes to take pictures of it for ideas for our gardens... Sometimes she likes to put us in them.

The building in the back is (I think) the Reptile House... it's my mom's favorite building at the zoo...

I started treatments up again yesterday (yay....) and was a little bit surprised to be put in an infusion room as opposed to a chemo room in the Day Hospital. Mostly because there was a tiny, tiny half-bed type thing... not really a recliner, but not really a bed either. More like a combination of the two. I found out that the reason I got put into a room usually used for transfusions (kids only stay for an hour or so) is because there are so many kids who need to be in isolation rooms (the normal chemo rooms with a private bathroom so there's no contact with outside people) that they had to put the "less critical" patients (ie me) into the infusion rooms... which just have a public bathroom in the hall. This public bathroom was a little bit tricky to navigate connected to a giant pole, especially when I was getting so many fluids that I had to USE the bathroom every hour (or more) and parents from isolation kept using the bathroom (even though it was clearly marked "Patients Only") so sometimes I would have to wait for someone to come clean it before I could actually go.

My mom and I were thinking up ways that I could pretend to be sick enough to be ensured a normal room... All of them involved faking the symptoms they always ask if you have (fever, vomiting, diarrhea, cough, sore throat) but that always runs the risk of me seeming TOO sick and not getting my chemo, which would suck and push me back further!

Arielle came to visit, which was super fun - we ended up watching several hours of Wife Swap with my mom - what is it about chemo that makes you become addicted to really, really stupid TV???

I also had a funny experience with "room service" - I had read the menu, and seen that under soups they offered the following: Chicken Noodle, Vegetable, Chicken Broth, Beef Broth, and Vegetarian Chili. So, my mom called down to food services (the phone was too far away from my pole for me to use it without unplugging) and ordered me a bowl of chili. Since vegetarian chili was the only one listed on the soup choices, we didn't feel the need to specify. Unfortunately, when they brought my food, I got TWO bowls of Gold Star chili - no spaghetti or cheese or anything. Just bowls of chili. For those of you not from Cincinnati, Gold Star is a type of Cincinnati-Style chili, which is more like a sauce, and always (ALWAYS) served either on spaghetti or a hot dog (Coney style). This is not a kind of chili you want to eat plain (like regular chili). Needless to say, I ate a few spoonfuls and gave up, sticking with my wheat toast. Oh well... probably chili and nausea don't go too well together...

Me & Arielle stuffed into my tiny chair-bed

This week is UC's open house type thing where students can go and meet professors and such, so I'm excited to go meet some of the new professors I'll have. School starts a week from tomorrow! FINALLY!

Lots of Love,

ps check out the previous post for content updates and NEW PHOTOS! wooo!

Friday, September 11, 2009

there's no place like home... *UPDATED!*

Hey Guys,

So my mom and I were in the Windy City this past week (although it was more like the Slightly-Breezy-Very-Foggy City, in my opinion...)

It was great to have so much time away from the house - combined with my trip to Berea/Oberlin, it's the most time away from my house since MAY! Yikes.

Anyway, we did TONS of shopping (fortunately for my dad, we did most of it at discount stores/H&M - the big names we just window shopped). I got some really fantastic pieces at SUPER low prices. I absolutely love love love H&M, and Chicago's Michigan Avenue store was definitely the best I've ever been in - even better than the last time I was in New York! I'm really into the whole 80's revival, and it was definitely in full swing at H&M. I found an amazing super pale denim jacket with puffy sleeves and really nice details on the bottom. I also found the perfect pair of lace up high-heeled oxfords and a variety of brightly colored tights (although I wore the shimmery purple ones to the bar last night and snagged them on a stool and didn't notice til there was already a hole - any advice on fixing that would be so welcome!). We also stopped by Filene's Basement (which I'd been hearing about but never visited). There was a lot of not-so-great stuff there, but a few reallllllly sweet finds for my mom and I. She got a couple of really cute things, and I found a pair of Betsey Johnson massively awesome rhinestoned sandals. Originally $250 and I found them for $60... I almost died.

We did a couple of tours - a bus tour around the city, and a really cool architecture tour on the Chicago River. Unfortunately, I forgot my sunscreen and ended up with a moderately scorched scalp. Bit of warning to all of you readers with cancer: NEVER forget to wear sunscreen on your bald head, even if you don't think you'll need it! It was super foggy when we went on our tour, and my mom & I both managed to get sunburned. A rosy scalp neither feels good nor is an attractive look. I've been moisturizing like crazy to make sure that it doesn't start to peel (which I'm pretty sure would just drive the boys crazy...)

Anyway, we also took a day trip to Oak Park to check out Ernest Hemingway's birthplace, as well as the 35(ish) Frank Lloyd Wright homes in town. This may make me sound like an idiot, but before that trip I'd always thought that Wright had been designing in the 50's - I'd had no idea that it was really the 1890's and early 1900's. That makes him even more impressive. Instead of doing the typical walking tour, my mom and I stumbled upon Rickshaw Rick - which sounds extra-cheesy, but really he was AMAZING! He took us all around Oak Park on an actual rickshaw. He knew so much about everything in Oak Park, and gave my mom and I a great tour. If any of you are planning a trip to Chicago, I definitely recommend a day in Oak Park with Rick.

My Mom & I in the rickshaw before the tour... Lookin' good in our shades

My lovely Mom in front of Ernest Hemingway's birthplace

We stayed in this very European little hotel called the Raffaello - also highly recommended. The beds were some of the most comfortable I've ever slept in, and the rooms were excellent - clean, light, and very pretty. The only thing was that they weren't particularly "service" oriented (no room service that I noticed, not very much concierge service) but I'm cool with that. Plus, we found an authentic Italian cafe (coffee, pastries, bar, lunch service) just down the street that we ate breakfast at every day. Our last day I even managed to remember enough to order in Italian (from the real Italians who work there). The Raffaello is in an amazing location as well - on Delaware, just block off of Michigan, and right by the John Hancock building. Right by all of the best shopping, but far enough off Michigan that it's quiet and peaceful, even in the city. It's also located right next to the Casino Club - an EXTREMELY mysterious and exclusive club for billionaires. No, not millionaires - BILLIONAIRES. Plus, Oprah's main residence is just around the corner. Awesome neighborhood!

Me on a fountain at the Presbyterian Church across the street from the Hancock Building

Me eating lunch & sipping champagne at the American Girl Cafe

I totally forgot to write about the fantastic lunch my mom and I had at the American Girl Cafe in Chicago... It was almost like a tea party - dolls included! We (obviously) hadn't brought any of my American Girl dolls along, so they even let us borrow one (actually... the sort of forced her on us, haha) to have lunch with! My mom and I each had a drink - I can't remember what it was called - that was cranberry and champagne - SO GOOD! For lunch, we got a "welcome" of a warm cinnamon roll, an appetizer of veggies and strawberries with cheese, a main course of cheese & cranberry quiche (great with the champagne!) and a dessert with a piece of cake, a cookie, and a cup of chocolate mousse (OMG sooooo delicious). We got tiny portions of everything, but when it all added up, we were so full by the end! The decor was amazing, too - lots of black and white and pink, with chandeliers decorated with daisies. Definitely not little-girly, but plenty whimsical!

I'm off to bed (again...) but I'll be back soon - tomorrow we're going to the Cincinnati Zoo for a Children's Hospital event. I'm excited to go back to the zoo for the first time in YEARS! I'll hopefully have lots of pictures and stories.

Lots of Love,

Back in the 'Nati

Hey Guys,

I know it's super late (at least here in the US!) but I wanted to do a quick update to let you all know that I'm back in Cincinnati!

For those of you who didn't know ( I can't remember if I mentioned it in my last entry or not) I've been in Chicago with my mom for the last five days, and before that I was in Berea and Oberlin visiting all of my BW and Oberlin in Italy friends.

Since I'm a patient in the Day Hospital at Cincinnati Children's, the Day Hosp was closed for Labor Day (this past Monday) and since my scans all came back normal (woo!) Dr. Adams decided that it would be cool for me to delay treatments a week (since I always have treatments on Mondays). My mom and I decided to take advantage of this and take a quick trip up to Chicago.

Now, since it's 2:15 am here, and I've had a couple of drinks (thanks to the always wonderful William in celebration of my clean scans), I'm pretty tired and I keep mis-typing. I wanted to let you all know, though, that I'm back in town and back to blogging. I missed you all!

You'll get a more detailed account of my trips in the next post or two. Until then, GOOD NIGHT!

Lots of Love,

Thursday, September 3, 2009

Finally Made It!

Hey Guys,

As you all know, I was supposed to go up to Berea to visit my apartment and see all of my friends up at school on Tuesday. However, that morning as I was about to walk out the door, Debbie called and gave me some bad news - my ANC (Absolute Neutrophil Count) was wayyyyy too low - 290! It needs to be at 500 for me to be around a few people, and 1,000 before I can safely be in large groups without having to worry about catching every little bug. I was SO disappointed - especially because she wanted me to stay home until THURSDAY to get more bloodwork done and check all of my counts. Fortunately, though, when I called her back later that day, she told me that I could go in early on Wednesday morning to get my workup - and it was at 560! Wooo! So I took off to Berea around 10am on Wednesday.

I was super excited to stop in Columbus and visit Tyler for the afternoon - we had a FANTASTIC lunch and then Tyler took me on a driving tour of the campus area and the victorian-era part of Columbus - the houses were SO BEAUTIFUL! We also walked around the Short North a little bit since it was the middle of the day on a Wednesday and no one was around (safe for my poor white blood cells...)

I made it up to Berea around 4:15 - I FINALLY got to see Gene and Katie and Emma (and Katie and Emma's new apartment right upstairs from mine!). This morning, I was thrilled to get to go sit in on Opera Workshop (one of the classes I'm supposed to be in) and say 'hi' to Scott Skiba (one of my favorite professors) and see everyone in my class (which was... too fantastic for words...) Tonight we're having a big dinner at Cornerstone (an awesome restaurant/brewery in Berea, right next to the Conservatory), and tomorrow I'm headed to Oberlin to have a quick visit with Matt and a dinner party with the girls I went to Italy with last summer (plus Herbert, our Danish friend)

I'm going to head out (I'm in the Music Library and supposed to be working on my Thesis... whoops...) but I wanted to let you all know what was up!

Lots of Love,