Monday, November 30, 2009

Back to Children's

Hey Guys,

It finally happened - I ended up with an infection while my counts were low :-(

I woke up on Friday feeling REALLY crappy, with a little bit of a high temperature (99.4). I went to a piano lesson, and then spent the rest of the day on the couch with the hope that my temp would stay below a fever (100.5), but, alas, by 11 pm I'd hit around 101. I wanted to wait until the morning to go in, but my mom packed me up and her & Andrew took me into the emergency room. By the time we got there, my fever had reached almost 102. They hooked me up to a bunch of machines to keep track of my pulse & blood pressure, but the machines kept going off because my pulse was so high (over 130!!!) because of my fever... We talked to a bunch of different doctors, and they FINALLY admitted me onto the Hem/Onc floor around 6 am - we'd let Andrew go home around 3 or 4 (spending the night in the emergency room is the worst thing ever. My mom and I basically didn't sleep for 24 hours, which is especially crappy when you're sick or your kid is sick)

I was really, really upset to have to spend the night in the hospital - I'd gone my entire 6 months of treatment without having to spend a single night, and as soon as I was finished I had to be admitted.

Tom Jaworek was in hospital at the same time, but he'd already been in a lot longer - he'd been admitted about a week ago, also for an infection (but I'm pretty sure his was a lot worse) and is staying until this weekend getting his chemo - he'll be done before Christmas, and I think both of our families will be relieved when we're both finished with everything!

I had hoped that somehow my doctors might let me go home in the morning, but when they came in for rounds on Saturday morning, they told me that I had to stay in for at least 48 hours until my blood cultures came back negative for blood infections. They also wanted me to stay in until my counts started going back up, because even though I'd started recovering from my last round of chemo, the infection had knocked my counts back to neutropenia (very low).

Saturday, Andrew came back to relieve my mom so she could go home and sleep, but later in the evening, my mom brought Brian by to visit, along with some movies. We had a little movie night and ate some DELICIOUS roast beef that my dad had made in the crock pot (my dad couldn't visit because he had a cough). Saturday night, I stayed by myself, but I called Tom in his room and we talked for awhile. We weren't allowed to visit with each other because we had both been admitted for infections (if we'd been in for chemo or something, we would have been allowed to visit with each other, but since we'd both been sick, they didn't want us passing anything back & forth)

Sunday, my mom came back a little after 9 so she could be there for rounds, and my doctors told me that I could go home at the 48 hour mark - which would be around 1 am, but they would let me go home since we live so close to the hospital. That afternoon, my mom went home for a little bit and I did some studying and read a bunch of magazines that she bought me. When she came back before dinner, we went down to the gift shop and to get some coffee so I could get out of my room and walking around a little bit (there's not much space to walk around in the rooms). We wanted to invite Tom, but his light was off so we thought he was sleeping - later on we found out that he always keeps his light off, so I felt a little bad since he has to spend a lot of time alone in the hospital since his sisters are away at college & both of his parents work.

After my bloodwork came back, my nurse came in to tell me that she'd talked to the on-call doctor, and they were letting me leave a little early - I could be released at midnight instead of waiting until 1 am (since my fever had been gone since early Saturday morning, they were figuring I didn't have any blood infections) - I was SO happy!

My mom took a couple pictures on our adventure down to the gift shop & cafeteria:

Apparently, there are a lot of irresponsible/semi-unfit parents at Children's. So many, in fact, that they post signs around declaring that Children's Hospital is a "no-hitting zone." At first, I thought this meant that kids weren't supposed to hit doctors & nurses during procedures, but when I read the sign more closely, I found out that it's actually telling parents not to hit their sick kids... In retrospect, I probably shouldn't be smiling so much about that...

This Santa is really creepy - it sings REALLY, REALLY loud. If I were a kid, I'd be scared of it. Actually - I was scared of it. I went up close to take a look, and it started singing, and I SCREAMED! I screamed so loud that a guy walking by started cracking up... Notice the lovely pole with IV antibiotics and fluids that I had to drag around with me everywhere... Very stylish...

In better news, I talked to my nurse today and they're so confident that I'll have clean scans that they've already scheduled my port-removal. I'll be de-ported (haha) on December 21st at 2:15 pm. I'll be done with EVERYTHING before Christmas!!! I can't believe it! I'm so excited to be done with all of this nonsense before the new year. By the time I go back to school, I should be all healed and it'll be all behind me!

Lots of Love,

Wednesday, November 25, 2009

Getting Back to Normal

Hey Guys,

I hope you all had a great weekend! I was soooo excited to be feeling better for the weekend, because I had a lot to do!

Friday night, I went out with a group of people to have drinks and celebrate the end of my treatments - it was interesting because I invited a mixed group of people that didn't know each other (mixing my "worlds" for the sake of a celebration!) I had a few friends from high school and a few friends from the opera, as well as some friends-of-friends that I didn't know well (it's always great to meet new people!). I had planned on going to see the movie Precious with a few people, but when we got to the theater there were two big problems: first of all, it was opening night of Twilight (whoops), so it took FOREVER to find a parking spot.... and then the movie was sold out! I was really surprised, but then I remembered that Precious has been all over the place being backed by Oprah, so I guess I should have expected that the first weekend it might be hard to get a ticket! We ended up going to Hofbrauhaus briefly, but the live music was SO loud, and the only available tables were right by the speakers, so we ended up moving to Bar Louie (where we generally end up). I was really excited to be able to have a drink, and ordered something that I'd been eyeing on the menu for MONTHS but hadn't been able to order. It had all of my favorite things: champagne, strawberry liqueur, strawberry puree, and some other fruity vodka... how could I go wrong?? Unfortunately, I forgot to take into account that the chemo always changes my taste buds for a week or so and it tasted HORRIBLE! I was so disappointed... but I'm definitely going to try ordering it again once I'm back to normal, because I'm positive there's no way it's not delicious!

Saturday night was a ton of fun - I saw Brian in Blood Brothers again at my old high school, and had a great dinner with my mom, one of Brian's friends, and her mom... and then I went to the Opera Ball After-Party. I obviously don't have $250 to spend on a ticket to the actual ball, so it was really great to be able to have the opportunity to get to the after party and enjoy the ambiance and the ballroom with my friends. I got to see a bunch of people that I'd worked with (who I hadn't seen since the summer) and I also got to say hi to one of Brian's doctors (his orthopedic surgeon, Dr. Crawford), who is a HUGE supporter of the arts in Cincinnati. I can't believe that I forgot about my camera, but somehow I did and ended up only taking a few pictures at the very start... I wish I'd taken more, because I got all dressed up, and my friends looked fantastic! Plus, the ballroom was so beautiful! The only downside was that the DJ wasn't so great, but towards the end of the night he started taking requests and playing much better music. The theme was "A Night at the Moulin Rouge," so we were kind of expecting lots of Edith Piaf and fun french music to dance to, but it was a lot of techno and club music, which is cool in that venue, but less cool when you actually want to dance and not just awkwardly jump around...

with Dr. Crawford

with Dina (Lauren's friend), Lauren (we worked together this summer), and Heather (a former opera employee)

Today was another fantastic day - it was my mom's birthday, so I got up early(ish) and made some breakfast - my first successful omelette (I was super proud that it actually turned out), and we had an AMAZING dinner at Carlo & Johnny's, a steakhouse here in Cincinnati. My dad ordered a really good bottle of wine, and I ate so much food! I told my mom I was glad that this is the week that the steroids really hit me, because I can keep eating and eating and not get full as fast as I normally do! Perfect timing for huge birthday dinners AND Thanksgiving!

I hope you guys have a fantastic holiday, and I'll be updating very soon! Most likely with Thanksgiving pictures...

Lots of Love,

Friday, November 20, 2009


Hey Guys,

Sorry it's taken so long to get this up, but my final treatment really kicked my butt! I barely got off the couch at all on Tuesday or Wednesday, and was in all day Monday because we had a meeting and then for some reason things kept getting delayed.

Instead of having my appointment at 8:30 am (which is when my appointments usually were), I had my appointment at 2 pm so we could meet with all of my doctors (and Brian's doctors) to kind of figure out a plan for the future.

Originally, they put me in the TINIEST room possible - an infusion room, which is usually used when a kid is just getting a quick infusion of something (an hour or less). Check out how crowded my giant brothers and my mom were in the corner of this tiny, tiny room (keep in mind I'm sitting in a dentists' chair barely a foot away from them!)

We had to fit my dad (who was out in the hallway waiting) plus three doctors and at least one nurse in the room for the meeting, so there's no way that was going to work! Fortunately, they were able to move me within a half hour so we didn't have to suffocate in the tiny room!

Part of being treated at Children's is that they have a great Child Life department that brings games and toys and gifts to kids for special occasions. For example, on my birthday they brought me a manicure set with hand lotions and really nice cream. And for my LAST CHEMO, they brought me a giftcard to Walmart so I can get myself anything that I'd like - I can't wait to go pick something out!!

I spent most of the afternoon reading a really fantastic book called Forever (I can't remember the author, but you should definitely try and find it... SO GOOD!)

My mom and I had eaten before we got to the hospital, but expected to be in and out pretty quickly (which didn't happen) so we ended up getting pretty hungry. My mom ran down to the cafeteria and brought back all kinds of "party" goodies that we wouldn't normally eat - chocolate covered donuts (my favorite snack) and cheddar chex-mix type stuff. I had to hurry up and eat mine before I started feeling nauseous, so I didn't savor it as much as I should have, but it was delicious nonetheless!

(yes, I am wearing a Where the Wild Things Are tshirt...)

As I was finishing up, Dr. Adams and Debbie came in to congratulate me - Dr. Adams even sang and did a little dance, but I totally wasn't expecting it, so I didn't have my camera ready, otherwise there would be a wonderful video of my oncologist doing her "Happy Last Chemo" dance!

(this picture was taken just post-dancing)

Starting to feel pretty sick from the end of the drugs, and totally ready to go home...

It was so amazing to get deaccessed for the last time - I think the only thing that will feel better will to finally get my port taken out. My nurse (Katie) was super-cool and just pulled the tape off as fast as she could (I've never had a problem with the tape hurting so I always get annoyed when it takes SO LONG for them to pull it off slowly!) and she also pushed the flush really fast so that it wouldn't taste as bad as long (the flushes they use make my mouth taste like rubbing alcohol and alway push me close to the edge of vomiting)

Monday night, I basically laid on the couch and slept it off - I was feeling pretty awful and not really wanting to go anywhere or talk to anyone. Apparently people were calling to see how I was doing, but I don't remember anyone calling!

Tuesday I felt REALLY awful, but I went to my piano lesson anyway, which was a little bit of a disaster. I played OK, but since I was on so much medication for the nausea, I couldn't quite focus on anything that my teacher was saying. I'm just practicing extra hard now to make up for it for next week!

Tuesday night I also noticed that my eyebrows and eyelashes started falling out A LOT! I'm hoping that they won't all fall out, but they're falling out more and more after each shower. The good news in, my hair will (hopefully) start growing back in soon, so there won't be much of a gap for my naked eyes...

Tonight I'm on my way out to celebrate a little bit downtown with some friends, so hopefully I'll be posting some pictures of that in the next few days!

Thank you all for all of your support!!!

Lots of Love,

Sunday, November 15, 2009


Hey Guys,

So I'm thrilled to announce that I just took my last dose of Procarbazine (my oral chemo) - the final four pills! I've got a week more of steroids, and then I'll basically be done with all of my pills... Tomorrow at 2pm I have my appointment for my last IV chemo, and that will be it for the "hard drugs" (haha)

I've had a really great weekend - I got to spend a bunch of time with some of my friends, and even got to hang out with a kid I haven't seen since high school (normally I don't particularly like running into some of the people I run into from high school, but sometimes it can be a lot of fun!)

Friday I didn't really get up to much, because I wasn't feeling so hot and James was pretty tired after work, but Saturday was a TON of fun! William and I went over to the Cincinnati Nature Center, which is this amazing park with old log cabins and abandoned buildings and ponds to explore. We spent a good amount of time running through fields and climbing trees (something I haven't done in SO LONG). I'm disappointed that I'd left my camera in my car (and Brian had to drive it) so I didn't get to take any pictures - it would have been the perfect day! The sky was so clear and it hit just above 70 - perfect weather! After I got back from the park, my dad and I went out and had some dinner - everyone else was out (Brian at rehearsal and my mom picking up Andrew from Bloomington), so we had a lot of fun at Applebee's (where I hadn't been in years, probably). I ordered the "small portion" of steak, and I'm glad I did, because I got a giant plate full of steak (well, a small steak) and SO MUCH steamed zucchini. I'm always happy when the "seasonal vegetable" at restaurants is steamed zucchini or broccoli or something, because then I can fill up on veggies and not eat so much bad stuff. Plus steamed or grilled zucchini is one of my absolute favorite foods. When I'm in my apartment on my own, I'm pretty sure I have zucchini cooked some way with almost every meal (I recently discovered via Food Network that you can shred zucchini into super-delicious pasta - one of my new favorite things to do!)

Saturday night after James got off work, I drove him, William, Stewart (James' roommate from college and someone we went to high school with) out to Newport to Bar Louie for drinks. I don't think I've really seen Stewart since high school, so that was pretty cool to get to hang out with him! I like going to bars with a bunch of guys - it's a totally different experience than going with a bunch of girls. It's always interesting to see the guys' perspective bar culture...

Today I woke up surprisingly sore from my jaunt in the park yesterday - I'm so out of shape, and hadn't realized it until I exerted a little bit of energy to run around! I'm actually pretty embarrassed about how tired I got and how sore I was this morning! I spent most of the day just hanging out, but this evening my mom & I went to see the show that James has been working on at Playhouse in the Park. It's called Three Sisters, and if you're in the Cincinnati area, you should definitely go check it out! I was kind of worried that it would be over my head, but I actually enjoyed it a lot! It's not too long, and it's pretty dramatic so there's a lot to pay attention to.

I'll update you guys tomorrow and let you know how the FINAL DAY goes! Hopefully I'll also find out when my scans are and when I can get my port out! Dr Adams said as long as the scans are as good as they were the last time, I should be able to get my port out within  a week of having them done, which means probably sometime the week before Christmas (I'm waiting to have my scans til finals are over at school so I don't miss any more class).

Lots of Love,

Friday, November 13, 2009

Tired Tired Tired

Hey Guys,

I really, really can't wait to be done with all of this! I feel really bad because people keep wanting me to go out, but by the time the evening comes, I feel a little bit like I've been hit by a truck. My body starts to ache, my mouth and throat are sore from whatever I've eaten all day, and I feel a little bit like I'm about to fall over most of the time. Especially when I've been in class all day - I can't even seem to focus on whatever's going on! I can't wait for my body to start to feel normal again, because I'm getting really tired of missing out on things because I feel like I don't have the energy to get out!

My last treatment is Monday at 2 - I'm kind of disappointed, because usually I have early morning appointments, which means no one's behind AND that I can be done by lunchtime (especially on my short days!) However, they had to push this appointment back because we're having a meeting with Dr Adams, Dr Cripe (Brian's oncologist), a geneticist, and our entire family. The doctors couldn't meet that early in the morning (or something) and they wanted to meet during my treatment so that we didn't have to come BACK to the hospital. I kind of think I'm going to miss out on a lot of the meeting because usually I start feeling pretty tired and sick during this treatment, so hopefully I'll be able to stay awake for at least part of it.

I'm especially excited for next weekend - Friday, I'm trying to plan a get-together with some friends in Cincinnati to celebrate the end of my treatment and Saturday I'm going to the Cincinnati Opera Gala After-Party with some of the friends I made at my internship this summer. I found a really nice dress a few weeks ago, and I'm happy that I'll be able to have the chance to wear it! Last time I went to a big opera party, I was photographed for the party pages of Cincinnati's social magazine. My big, shining moment!

Lots of Love,

Tuesday, November 10, 2009

Still Sick...

Hey Guys,

I'm still feeling pretty sick from yesterday, which is worrying me about next week's treatment. I think a lot of it has to do with me thinking about it too much, and maybe a little bit of a punishment for me being so excited about being finished!

Today my mom & I got to have lunch with our friend Sarah, who works for Children's. We've known her for a long time, and she had Hodgkin's when she was about my age (she's in her late 20's now) and just had her first baby six weeks ago! She brought him to breakfast with her, and he's so adorable and extremely well-behaved - he hardly made a sound the entire time, and basically slept (with a few little quiet wake-ups). He looks like her, too - his hair is strawberry blondish (what hair he has) and she thinks it looks like it might end up being curly. I love babies, but I definitely wouldn't be ready to take care of one full-time right now. Babysitting is always fun, though...

I got to go to class today, but I was feeling really drowsy, so I can't really remember much of what we talked about - I'm glad I always take really detailed notes, and that my final is going to be awhile after my last treatment so I can kind of regain my focus. I miss not having trouble remembering lots of details in my history classes! Although, I have been getting A's on all of my exams and essays in my French Civ class - I'm a little worried about my German Song class because the entire grade is based off of the oral final at the end of the semester. I think I'll do OK though. I really love history, so it's never too much of a chore to study for my history classes.

I had kind of a bad piano lesson - I hadn't practiced as much as I should have, and I haven't been practicing the way I should have been. We spent most of the lesson playing through just a few measures, and my teacher gave me a new way to practice that should make my practicing more efficient and productive. I have to play in a studio class in early December, so I really need to start practicing more every day so I can play well in the class. My teacher's assigned me a song I really like, so that's not too bad. I think we need to get our piano tuned, though, because (even though my relative pitch is very off) it sounds so much different when I play in my lessons or the CCM practice rooms vs playing on the piano at home. I used to practice on Brian's keyboard, but then he got the flu, so I'm not really supposed to go in his room much, and I prefer to play a "real" piano anyway - it's easier to make songs sound more musical (at least for me)

Hope you all are well with the beginning of flu season!

Lots of Love,

Monday, November 9, 2009

Almost Finished!

Hey Guys,

So today I had my second to last treatment, and it was pretty rough. I started getting nauseous on my way to the hospital - I think it was a psychosomatic thing. Just anticipating the treatment is starting to make me feel sick, so that makes me even more happy that I'm almost done.

For some reason, the IV kytril didn't work getting rid of my nausea, and I had hoped that if I ordered lunch it might go away, but no luck. It took a few different pills (including zofran and pill kytril) and some ginger tea before I started feeling relatively normal.

I got a little bit of a surprise today - when my dad stopped by to drop off some lunch for my mom, he ran into the dad of a girl I graduated from high school with. Her mom was diagnosed with breast cancer recently, and they were at Children's because their daughter who's Brian's age has been having migraines. Once she was done with her appointment, they stopped by to visit, which was really nice! We got to hang out for a little bit, and it was good that they stopped by because I had wanted James to visit, but he wasn't allowed since the flu restrictions were put in place.

Child Life (the program that supplies toys & things to kids in the hospital) has kind of stopped visiting me since I never ask for anything from them. However, we were in Kroger the other night and found the most AWESOME Disney Princess coloring book that came with 600 stickers. I'm in the process of coloring pictures for all of my friends... I forgot how much I love coloring!!!

This weekend I went up to Cleveland and had a really great time seeing all of my friends - Marina came over on Friday night and stayed in my apartment. We went out to dinner with some of the girls, and then watched The Proposal and drank wine with Erin. Saturday morning, Marina and I had brunch at First Watch in Crocker Park and visited the farmer's market. I ended up going over to Oberlin & hanging out with Matt for a little bit, but I didn't get to see him long since his parents were in town. That night, I FINALLY got to hang out with Josh - it was so wonderful to see him after so long! We ended up at the bar (where another drunk guy kept rubbing my head!) and then went back to my apartment with Erin and watched The Matrix Reloaded (which is a terrible movie). Sunday I got to have lunch with Gene and then drove home. We had dinner at my grandparents, which was SO delicious - ham with green beans, AND a  roast, plus tons of veggies and an apple tart and a pumpkin pie.

I can't wait for the week to go by so I can finally be finished with all of this nonsense!!!

Lots of Love,

Monday, November 2, 2009

Halloween pt. 2

Hey Guys,

Here are the rest of the pictures from my Halloween at Home... Enjoy!

Our fall trees are so beautiful...

the bushes in our front yard grow fall berries and turn BRIGHT red... such a fantastic color!

my mom's hydrangea...

the only red flower in a bunch of green leaves...

holly! I can't wait for Christmas...

my mom's last rose!

so many birds!

wonderful Halloween sunset

Finally, two weeks from today I have my last treatment! Unfortunately, I can't bring anyone with me (except my parents) because Children's has instituted a "No Visitors" rule because of the flu, but we can all celebrate later that week! I can't even believe it!

Lots of Love,

Sunday, November 1, 2009

Halloween pt. 1

Hey Guys,

I had a pretty tame Halloween (since my counts are too low to actually go anywhere or have a party) but I took TONS of pictures of my mom's beautiful fall flowers and pumpkins and other things, so here they are...

pumpkins pre-carving: Brian's on the left, mine on the right!

my curly stem - I always try to find one with cool stems!

I went for a classic pumpkin look...

We tried to put Lily (Brian's cat) into his pumpkin. Cats don't like being put in pumpkins...

Brian's pumpkin - he found this design online and then drew it on his pumpkin freehand... I'm impressed.

Getting ready to pass out candy

Pumpkins at night... Brian's is really scary....

Stay tuned for more Halloween pictures!

Lots of Love,