New York, I Love You (Part 3)

Sunday:

On Sunday we got up and met some girls for brunch at 1834 Bar & Burger. The girls were all really nice and they even gave me a scrapbook that I can use to scrapbook about NYC. They filled out the first several pages with some of their favorite places in the city. I can't want to fill in the rest of the pages with my NYC experiences.

After brunch, Laura and I went to a film festival where they were showing several short films. The first film was my favorite, after that it was kind of downhill. It was still a fun experience.

Next we decided to venture into Brooklyn. Unfortunately, my legs were killing me from walking too much so we didn't get to walk around Brooklyn a lot. We did eat at a really good restaurant called Lodge. I got the gouda mac & cheese and it was delicious.

After dinner my legs and feet were pretty sore so we just went back to Laura's apartment and hung out for the rest of the night. It was a fairly low key day but I had a ton of fun!

Monday:

I got up and packed all of my stuff so that I would be ready to catch my flight later that day. Then I took a taxi to the Empire State Building so that I could visit the college I will be going to next year. It's called The King's College and it's located inside of the Empire State Building. I met with my counselor and took a tour of the apartments where I'll be living next year.

Next I made a stop at a cupcake shop called Crumbs to get some cupcakes for my brother and mom. I got my brother a set of 12 different mini cupcakes. For my mom, I customized a 'six pack' of big cupcakes. They all look really delicious and I'm proud that all of the cupcakes actually made it home without any bites missing.

After that, I headed over to Laura's office at MTV to hangout and blog for a bit. We had lunch in the MTV cafeteria and I basically took it easy for awhile. Then we went over to the Aerie store in Times Square. Laura's roommate, Lauren, works there and wanted me to come by to check it out. I ended up getting tons of comfy lounge wear that I can wear in the hospital. Lauren and her co-workers were nice enough to put together a little gift bag for me, too.

Right around the time that I was purchasing all of my comfy clothes, I got a text from my mom that read 'your flight has been cancelled'. I called her, assuming it was a joke. Turns out it wasn't. Laura called the airline and they told her that the flight was cancelled because there were problems with the plane. My flight had to be rescheduled for Tuesday at 6:30 a.m. At first, I was bummed because I was really tired and ready to come home and rest. But it ended up being okay because Laura had a clothing swap party planned for that night and I got to go.

I took a taxi back to Laura's place early so that I could clean her apartment for her because she hadn't had time to clean while I was in town. When she got home from work, I helped her make some party food for her friends. She had 8 friends come over and they all brought clothes that they didn't want anymore. Then we drew numbers and got to pick out stuff we wanted. It was really fun to see people fight over the good stuff. I didn't want to participate because I hadn't contributed anything to the party but Laura insisted so I did snag a couple great things. I got a black marc jacobs clutch, an ed hardy scarf (it's actually a really cute floral print, doesn't look tool-ish), a D&G hat and some jewelry. Alex, the one who did my hair the other night, also brought me a gift bag with some beauty goodies. It was really fun to hang out and laugh and swap clothes. All of Laura's friends are really nice.

Tuesday:

This morning I got up around 4:30 (3:30 our time) and headed out to the airport. Thankfully my flight was on time and I got into Kansas City around 8:30 a.m. I came straight to the hospital where I'm now waiting for the results of my labs. We're just checking to make sure I'm okay after my long trip. Hopefully I'll be able to go home soon so that I can take some pain meds for my legs and so that I can get some sleep.

**Reason of the Day: Staying an extra day actually ended up being great because it gave me more time to hang out with Laura and all of her great friends. I like to believe that everything happens for a reason. Sometimes that's hard. Belief is always a reason to smile (RTS).

New York, I Love You (Part 2)

Friday:

Friday I slept in until after ten because I was exhausted from my night of Broadway fun. After I woke up, I took a nice walk from Laura's apartment to her MTV office in Times Square. We ate lunch in the MTV cafeteria and I got to hang out in the office for the afternoon. Laura's co-worker, Dre, showed me some cool/complicated computer stuff and burned me a CD of some sweet music. Laura and I took a nice break to enjoy some chatroulette fun.

After work, Laura and I stopped by H&M and bought a million scarves. Not really, but we bought a lot. Earlier in the day we did some research on some cool ways to wear head scarves. I will be the most stylish bald chemo patient ever.

Later that night, Laura's friend named Alex came over. Alex does hair and makeup and is a pretty awesome person. She came over to do my hair and hang out. We ordered sushi and she cut several inches off my hair. We also dyed my hair an intense shade of red. It's lovely. If anyone happens to need a hairdresser, you should just come to New York and have Alex do it. It's worth it. Really. I've decided that she's hired when I move out here for college. After my hair was done, it was extremely late but we decided my hair was too good to waste so Alex did my makeup and Laura dressed me up and we went out. We were out very late. Very, very late. I met some interesting New Yorkers. Very, very interesting.

Saturday:

Due to our late night festivities, I also slept in today. For lunch, we went to this awesome arepas place called Caracas. It was delicious. They have the best guacamole I've ever tasted in my life and their chips are homemade. Mmm. After that, we walked around a little and then headed back to Laura's place to take a power nap.

After our nap, we headed over to NBC to see the taping of SNL. My mom has connections to a woman who works for NBC and she got us tickets to the show. Here's a picture of me with my SNL ticket and new haircut:

Not only that, but we ended up in the "special line" which landed us in seats on the floor. The actual studio has some stadium-type seats in the back but then there are a handful of seats located on the actual studio floor, right in front of the stage. These seats are located in front of the center stage and they rotate so that you can turn from side to side to see all of the different sets. We were in the third row but off to the side so there weren't any seats in front of us. Almost all of the scenes took place on sets on the right side of the stage, right next to our seats. Laura and I were on the end so we literally could have reached out and touched several stars and cameras. Creepy. Tina Fey was the host and she was amazing. We really lucked out by getting her as the host. Her Sarah Palin impression was awesome, as always. There was also a cameo from Steve Martin and Justin Bieber was the musical guest. It was definitely a blast and I'm so glad that I got a chance to see the show, especially with Tina Fey as the host. Seeing SNL was actually on my bucket list so I'm excited to check that off the list! Here's an autograph I got from Tina:

SNL wore us out so we decided to just come back to the apartment instead of going out again tonight. Now we're watching SNL on TV. Tomorrow I think we're going to head over to Brooklyn. This trip has been so exciting and I can't wait for more fun to come!

**Reason of the Day: I've been a fan of SNL for quite awhile and I always look forward to watching the show every Saturday. No matter what, SNL always makes me laugh. Laughter is always a reason to smile (RTS).

Stay tuned for more updates from my exciting trip!

New York, I Love You (Part 1)

Lovely Readers,

Anyone who knows anything about me knows one thing is for certain: I am in love with a little place called NEW YORK CITY. Yes, it is true. I do not get to visit nearly as often as I would like but I will be going to college there next year so I will finally be able to call this glorious city my home. Until then, I will have to settle for a short visit. I leave tomorrow morning at 7 a.m. and will be spending 5 days/4 nights in Manhattan.

Today has been a crazy day of packing and pumping myself up for the trip. I also had the very exciting experience of being able to stop my iron chelation medicine! I've been hooked up the medicine pump since December and it felt sooo good to be able to unhook myself. I'm very thankful that the medicine has been working so quickly because it has resulted in my doctor giving me permission to stop the medicine while I am away so that I can actually enjoy my trip.

I will update this post as often as possible throughout and/or after my trip to fill you in on all of the juicy details. For n ow, I thought I would give you a little background on the amazing friend that I am going to stay with while I am away.

Her name is Laura. She's pretty awesome. Laura was actually raised here in the KC area and moved to NYC after college to pursue journalism. (sound familiar? fast forward my life ten years.) She now works for MTV and has connections to just about everyone/everything worth knowing in NYC. We met about two years ago because my hairdresser used to do her hair when she was in KC. Over the past two years, she has been responsible for so many of the great opportunities that I've been able to experience. I've visited her MTV offices twice in the past, she got me on TRL where I got to sit on the VIP couch, she introduced me to a woman at ABC who let me hang out in the ABC offices twice AND she got me access to meet Diane Sawyer,

Robin Roberts and Charlie Gibson. She also took me to the MGMT/beck concert when she wa

s in town and we ended up hanging out with MGMT in Westport afterwards. Needless to say, she has soo many connections and I am so thankful that she has shared many of those connections with me.

This trip is the last time that I will be in NYC until after transplant and probably the last time before moving out there for good. It will be the first time I fly alone, first time I catch a taxi by myself and first time I'm alone in a big city! I'm very excited. I know Laura has a few tricks up her sleeve but I won't give them all away now. You'll have to keep checking my blog for updates about the exciting things that happen. For now, I'm going to go finish packing and head to bed. I have to be up at 4 a.m.! Yikes.

Thursday: My flight left KC at 7 a.m. and I arrived in NYC a little after 10.

I managed to be the first off the plane and grabbed a cab to head over to Laura's apartment. After meeting Laura at her apartment, I dropped off my stuff and we walked over to her MTV office. I spent the rest of the morning hanging with her and her co-workers. For lunch, we walked over to the Chelsea Market area and ate lunch at Friedman's . After that, we headed upstairs into the Food Network building. Laura and I met her friend who showed us a taping of Ten Dollar Dinners. In case any of you were wondering, they aren't real houses. They're sets. I knew it. Here's a picture of the set:

It was really interesting to see how much cooking actually happens behind the scenes and to see how much it takes to make the food look good. We also got to take a look at the test kitchens, where the chefs and their assistants spend most of their time testing recipes and such. I even saw Miriam Garron, Bobby Flay's Assistant on Throwdown with Bobby Flay, working in the kitchen with another chef. Here's a picture of the test kitchens, if you look closely on the left you can see Miriam:

After that, we walked The High Line. The High Line was originally used for freight trains but it has now been turned into an elevated park. It's beautiful! I forgot to snap a picture but they've created a walkway with plants and flowers growing among the old tracks. It's really neat.

Later that day, I got ready for my night on Broadway by getting ready in the MTV offices. Laura and her co-worker, Becky, decided to make an impromptu hair salon. Here's a picture of Laura doing my hair and Becky doing Dre's hair. You can't tell from the picture but Dre's hair is really long and he got it braided.

Once my hair was done I headed over to see opening night of The Addams Family. Laura's friend, Jason, has a sister who is one of the producers for the show. She was able to get Jason tickets. Since it was opening night, there were celebrities and important people everywhere. The actual theater had two boxes and our seats were in one of the boxes! It was hard to spot celebrities but I did see Andy Dick who was seated a few seats away from us. I also heard of several other celebrities being there. One of them was Hugh Jackman. I didn't personally see him but this article says he brought a girl from the Make-A-Wish Foundation. Two years ago, I received a wish from The Dream Factory, a similar charity, and know how great it feels to have a dream come true while dealing with a serious illness. Props to Hugh for being so generous. Also note, I got a picture in front of the same background as him! Here are a few pictures from he night:

The show was really great! I didn't know much about The Addams Family before seeing

the show but I was pleasantly surprised at how funny and well-done it was. After the show, we were lucky enough to attend the after party. The party was fabulous. There was great food, an open bar and a dance floor. Jason kept pointing out all of the billionaires and important people we passed. Jason also made me take this really cheesy picture.---->

By the end of the night, my feet were quite tired so I fell asleep shortly after returning to Laura's.

**Reason of the Day: Jason's sister, Eva, was the one who gave me a free box seat ticket to the show. Eva hadn't even met me but had heard about my blog and wanted to do something nice. The kindness of strangers is always a reason to smile (RTS). **

THE Ferriscan

I promised you an entry about this weekend so here it is:

Thursday:

We left KC around noon and made it to Minneapolis in seven hours. I drove the last six of the seven hours. We took my car this time instead of my mom's van so that made driving much more enjoyable for me. I don't like driving tanks. I much prefer my tiny two-door. My mom napped and read most of the time while I listened to music. Anyone who has made the drive from KC to Minneapolis knows that there is nothing more exciting to say about the drive.

We got to the hotel around 7 and rushed to the room so that my mom could catch Survivor. After that, we grabbed some dinner and that's about it. Pretty uneventful.

It's now past midnight and I have to be up in less than six hours. I should be asleep. I am not.

I can't help but think about tomorrow. Tomorrow morning we head to the hospital for me to get the ferriscan done. Yes, THE ferriscan. The ferriscan that will determine whether I can start transplant now. If the results are good, we pack up and get ready for transplant. If the results are bad, I go back home and wait longer. Either way, transplant is unavoidable. Now it's just a matter of 'how soon can I get this hell-fest over with?'. I'm done waiting. For some reason I have a bad feeling about this trip. Maybe it's because it seems like the past few months have been one disappointment after another. I would like to think positively but I don't want to get my hopes up again. What if my iron levels are still too high? How much longer can I live like this? How much longer can I feel like this? Am I ever going to be healthy again? Does ANYBODY have the answers to these questions? I sure don't.

I should try to sleep. Tomorrow isn't going to be any easier than today.

Friday:

So I ended up getting two hours of sleep last night. Not fun. We made it to the hospital and I checked in for my ferriscan at 8 am. The ferriscan was pretty easy, it basically just involved me laying in an MRI machine for half an hour while they took pictures of my liver. The pictures have now been sent off to be looked. We should have results in about a week or so. Waiting for results will be the hard part. To say I'm anxious would be an understatement.

Afterwards we took a tour of the BMT (bone marrow transplant) unit. We took a tour back in August but I couldn't remember what anything looked like. The unit is only for bone marrow transplant patients and it consists of 20 rooms. There's a nurse's station in the middle of the unit and the rooms surround the station so that it ends up being one big loop. There are big rooms and small rooms, I've heard that it's better to be in a smaller room because that means you're doing well. If they move you to a big room, it means you need more attention/care. The small rooms (where I hope to spend the entirety of my hospital stay) are extremely small. There's a private bathroom with a shower, a hospital bed, a roll-away bed for one parent, a tv, a wii or ps3, a window and a computer in each room. The doors to the rooms have to be closed at all times and you can't have more than three people in your room at a time. There's also a parent room inside the unit where parents can go to take a break. That room has a living area and a kitchen. The place seems pretty nice but it was hard not to notice how quiet it was. The hall/loop was empty except for nurses. A typical hospital stay for a BMT patient is 6-8 weeks. After that, I get discharged and go to stay in the Ronald McDonald House for the remainder of the 100 days. More details on that later on IF I end up starting transplant soon.

After the hospital we headed to the Mall of America for some quick shopping and lunch. We originally planned to spend the afternoon shopping but I was exhausted from lack of sleep so we ended up leaving town early. We had also planned to only drive part of the way today and then spend the night at a hotel and finish the drive on Saturday. Once we were on the road I realized I just wanted to go home as soon as possible so we drove straight home. I wanted to drive but my mom made me take a nap first because she didn't trust me to drive after only two hours of sleep. I don't blame her. We just got home a little bit ago and I'm exhausted so I'm getting ready to head to bed. Tomorrow is a new day. It's time to take a break from the stress/anxiety and start getting excited for my NYC trip! More details on that soon.

**Reason of the Day: Today I saw multiple wind turbines. Alternative energy is always a reason to smile (RTS). --you probably won't understand this one unless you're a debater. or a nerd. or both.

Graduating and Packing and Traveling....Oh My!

Dear Readers,

This past week I've been pretty productive. I finished my senior paper and all of my remaining assignments for school. After I turn everything in, I will officially be done with high school! Unfortunately, I will not be in town for graduation but the school is going to send me a DVD of the ceremony and the cap/gown company is going to send me a cap and gown for me to keep. I think my mom is also going to get a cake and stuff for the hospital room for actual graduation day. Although I'm sad to miss graduation, getting some healthy bone marrow is a nice consolation prize. My dad is also helping me plan a graduation/going away party for my family and friends before I leave. Look for invites soon!

I also started the dreaded task of packing. To be honest, I never really unpacked when I came back from Minneapolis in early December. I sort of told myself that if I didn't unpack, it wasn't really happening. Nice try. So basically I've been living out of buckets for the past few months. I thought this would make re-packing much easier. However, turns out now I have to take out all my winter clothes and replace them with spring/summer clothes. I've finished most of the packing and it looks like I'm only going to be bringing: one large blue tub, one pink tub (filled with goodies from classmates, friends and family) and one large black suitcase. I also have another blue tub filled with a comforter, foam layer for my bed, etc. But I don't really count those things. I'm an extreme over-packer so I think I've done quite well. Last night while I was adding some things, I noticed this:

I think this is my cat's way of telling me that she wants to come along. Unfortunately, the hospital won't even allow real flowers in my room. I doubt they're going to let a real cat. Sorry Gracie, you're going to have to stay home. Mental note: make sure to check luggage carefully before leaving to make sure there is not a cat hiding inside.

Lastly, I've been planning and getting excited for two upcoming trips! The first is this weekend. This trip won't be very fun but it's super important. My mom and I are making a quick drive up to Minneapolis so that I can get a ferriscan done. This is the test that measure how much iron is in my liver. My ferritin levels (amount of iron in my blood) have been dropping rapidly so we expect to see the same with the ferriscan. If that is the case, transplant is a go! If not, I might have to wait longer. The ferritin levels have indicated that my ferriscan results should be in my favor. We'll see. I'll make sure to blog during the trip. The second trip is next weekend. I'm going to New York City! Again. This time I'm flying by myself and I'm going to stay with Laura, that amazing woman I mentioned in a previous post. You'll learn much more about her when I blog during my trip. I'm going out for 5 days/4 nights. This trip's timing is great because it'll be the last thing I do before leaving for transplant. Hopefully the joys of New York will follow me and help motivate me through transplant. I'll make sure to blog about that trip as well.

Later in the week I hope to find time to blog about COLLEGE! That's going to need a post of it's own.

Hope everyone has a lovely week and ENJOY THE WEATHER!

**Reason of the Day: It's currently 65 degrees outside. Nice weather is always a reason to smile (RTS)**

PS- I've started a facebook fan page so feel free to join. Just click the link on the right-hand sidebar.

St. Patrick's Day 2010

Happy St. Patrick's Day, although technically the day is over. This is the one day of the year that being irish makes you awesome. You may notice that I'm blogging at 3 in the morning. This is not because I just got back from crazy St. Patrick's Day festivities. Although, that might make things more interesting. No, I'm still awake because I don't sleep much at night. I started having nightmares awhile back, probably because of the stress, so I just stopped sleeping at night. I find it much easier to sleep when the sun is out because it's soothing. As a result, my days have become my nights and my nights have become my days. Since I'm awake, I might as well blog. I know I'll be regretting this when I have to wake up at 7 to go to the hospital. Tomorrow, technically today, is transfusion day. The lovely day that I get to experience every two weeks where I go to the hospital and spend 6-8 hours getting blood and other goodies. This time It's two bags of red blood cells and a bag of phosphorus. Oh, the joy.

As I'm sure you've noticed, I've given my blog a makeover! I was getting tired of the old template so I went template hunting. Unfortunately most of the good ones aren't free so this is the best I could find for free. I'm thinking about splurging and paying to have a template custom made for my site but for now, this one will work. I've also added a box that allows you to become a fan via facebook. When I started this blog, I intentionally didn't make a facebook page for it because I didn't want to seem conceited. I'm not a big deal. However, after seeing how many people have been signing up for email subscriptions, I decided it was worth a shot. To my surprise, it took less than 48 hours to get over 100 fans. I think now I have almost 200 fans. I am so happy to see so many supporters of my blog! I also added a playlist so that you can listen to some music while reading my blog. I love music and my itunes is open pretty much 24/7, even when I sleep sometimes. I thought it would be a nice touch to add some songs that are either inspirational, emotional or just plain fun.

This past week has been crazy hectic. On sunday, my mom and I went to brunch to celebrate the good news. It was delicious, chocolate fountain included. Then I headed out to the legends to meet up with some friends for a hotel sleepover. It was the first time I've done anything social since January 2nd. I had more fun than I expected and was so glad that I went. The only negative was that I've spent this week being incredibly sore from being that active. The rest of my week was spent doing homework. My goal is to finish all of my schoolwork before I leave so that I can be essentially graduated. I won't be able to attend graduation but I think it's important that I finish everything and graduate on time. Since I'm missing graduation, I'm hoping to at least have a graduation party before I leave.

As a general update, my mom has spoken to my doctor in Minneapolis and we've settled on some dates. April 1/2 my mom and I will visit Minneapolis and I'll get a ferriscan done. The ferriscan is the test that measures the levels of iron in my liver. We expect these levels to be greatly decreased from my last test (based on the blood tests that measure the iron in my blood). Then we'll come home and celebrate Easter. The next weekend, April 8-12, I'm taking a trip to NYC by myself for the first time. I'll be staying with Laura, an amazing woman/friend who is originally from KC and now lives in NYC and works for MTV. She's incredible and has done so much for me over the past two years. This trip will be the last time that I will be able to visit my favorite city for at least a year. The next weekend, April 17/18, my mom and I will pack our things and move up to Minneapolis. Again. This time, i'm not coming home without some healthy bone marrow. The week of the 19th will be spent doing the pre-transplant tests and check-ups, bone marrow biopsy included :(. Then sometime shortly after that we will start chemo. I don't know the official start date for chemo yet, we won't know that until we get closer to the time.

Well, I think that's it for now. I'm trying to blog more frequently so you'll be hearing from me within the week. Maybe.

Reason of the Day: I'm not a big sports fan, but the Kansas Jayhawks won the Big 12! and K-State Wildcats got second. Much more Kansas success is expected throughout March Madness. Also, NDT (National Debate Tournament aka BIGGEST DEAL EVER) is coming up and three teams from KU qualified! This is extremely rare and impressive. Two of these teams consist of Patrick and Sean Kennedy, both of whom are East graduates and assistant coaches for our debate squad. A KU team won the NDT last year and one of these three teams could win it all this year. KANSAS PRIDE is always a reason to smile (RTS).

Good News

Dear readers,

I'm aware that I haven't blogged in awhile. Again. I decided not to bore you all with my continual crappiness. The past few weeks have been pretty tough, as have the past few months. For a quick update, I am still doing the iron chelation and the drug has become a little more tolerable. I'm able to eat more regularly and haven't thrown up in awhile. I still have stomach problems and I've still been feeling pretty crummy but it's more manageable at this point.

As far as my mood, it's no lie that I've been struggling with anxiety and depression since I got home. Anyone who knows anything about what I've been through would not be surprised to hear that. It's hard to admit to feeling depressed because it requires you to admit a weakness and admit not having control over things. As I've said before, I'm learning it's ok to NOT be ok. It's ok to have a bad day. It's ok to feel like crap. It's ok to wish things were different. As long as you realize that life won't always be like this. I'm happy to say that although I feel depressed a lot, I do feel in control because I can distinguish the fact that I will not always be depressed. Life is unpredictable and things can always change.

(clever segway to my good news!)

Speaking of change..... :)

Today I went to the hospital for a clinic visit for the third day in a row. Today I was just there for four hours to get some phosphorus by IV. A few hours in, my Nurse, Cathy, walked by and here's a lovely little play-by-play (as I remember it).

Cathy: Have you checked your email yet?

Me: What email?

Cathy: I'll be right back!

(walks away and comes back with two pieces of paper)

Cathy: The first page is the chart I sent to Doctor Tolar (my doctor in minneapolis). It's a chart to show your ferritin levels decreasing from the iron chelation we've been doing. The second page is the response that he sent me.

(I take the second page)

Second page: "Cathy, I think Elizabeth is ready to come for transplant now that her ferritin is below 1,000. She is remarkable! JT"

!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! <-- lots of exclamation points

That's right ladies and gentlemen. I'm ready for transplant! I've been on this drug for three months and they expected it to take 6-12 months for my ferritin to be low enough to get me ready transplant. There was even a chance that my ferritin would never be low enough to safely transplant. My results have been, as Tolar said, "remarkable"!

So what now? Well, I'm going to pack up my things, again, and move back to minneapolis for transplant! For those of you who have not been following my blog, you're probably quite confused by this post. Sorry, you'll need to catch up on your own. After talking to my parents, It looks like I'm going to leave in about a month- April 17/18. This will hopefully give me time to pack up, clean, and maybe finish my last class so that I can basically graduate before I leave.

I think that's enough good news for one day. I will be updating more frequently as things unfold and as I plan to embark on this tough journey.......again.

PS- For those of you who have not already done this, you can get emails every time I post if you type your email in the box on the left. This takes away the hassle of having to check my blog on your own and allows you to keep up with my crazy journey.

Hope everyone else is having a great day!

Another PS- Special thanks to everyone who donated blood a few weeks ago at school. I get transfusions every 2 1/2 weeks and I can tell you, donating blood really does save lives! Without people like you, I would not be here right now. Thank you for your selfless actions.

Reason of the Day: This whole post? Duh! Good news is always a reason to smile (RTS).