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).

Valentine's Weekend 2010

First off, Happy Valentines weekend for those of you lovey-dovey, googlie-eyed monsters. Second, thanks to everyone for continuing to add to my list of subscribers! If you haven’t subscribed yet, do so! It makes it much easier to follow my blog.

I guess I should start by apologizing, yet again, for taking a break from my blogging. To be honest, I’m in a rut. I’ve actually tried for the past three days to write this blog entry and couldn’t seem to do it. I think the problem is that I feel like I have this pressure to smile and act like everything is going to be okay. When really, I don’t feel like that at all. I almost feel like a disappointment for having mostly negative things to blog about. I realize that sounds silly but it’s how I feel. Don’t get me wrong, I’m glad I decided to do this blog and I don’t want to quit, it’s just so hard to stay honest and blog about what I’m really going through. It’s a lot harder than I thought it would be. Nobody wants to be a Debbie-downer.

I decided right now it would be best to reflect on the past three months. Three months ago, I started my blog with the strength and positive energy to face an unfathomable battle. I packed up my things and left my home, knowing there was a chance I would never come home. Two months ago, all positive energy and strength was ripped from me as I was sent home to wait. One month ago, my lack of faith started to hit me. I stopped being social. I became overwhelmed with feelings of sickness and I found myself becoming shut off. Today, I realize that this past month has been the hardest month of my life. Even scarier is the thought that things are only going to get harder.

As shameful as it is to admit, I think it’s important that people understand what it’s like to actually experience what I’ve gone through. I really can’t find the words to explain how I am feeling. It’s almost as if I’m experiencing some sort of post-traumatic stress disorder. I prepared my mind and my body to be as strong as possible for months of intense pain and suffering. Only to have everything ripped up from under me. I haven’t seen a single friend since the beginning of January. I rarely talk to any of my old friends anymore. I’m completely shut off. I understand that part of this is my fault, but I don’t think all of it is. People don’t realize what happens when the attention fades. All the excitement and encouragement is gone. All of the prayers and luck is gone. Nobody checks on you. Nobody remembers. Their lives move on and mine doesn’t. This isn’t something I get to forget about or push aside, This is my life. I can’t escape it like everybody else can. My goal in writing this is not to make anyone feel guilty, it’s simply to show you what it’s really like to be me.

I think that’s enough negativity for one day. Hopefully next time I blog I will have something more positive to report. My spirits aren’t exactly high right now, but all I can do is take it one day at a time. Today might suck but there’s always tomorrow.

**Reason of the Day: This past Tuesday was transfusion day so my dad and I dropped my little brother, Ethan, off at his daycare before heading to the hospital for a day of transfusions. As Ethan got out of the car he turned to me and said, “Have fun getting blood!” Supportive 5-year-olds (with possible vampire humor) are always reasons to smile (RTS). **

January 2010

Readers,

I've been quite a lousy blogger these past few weeks. Mostly because I've been having a rough time lately and just needed some time to rest up and feel better. Here's a recap of a pretty mundane few weeks.

I really haven't done anything too exciting lately because I've been quite sick. It all started around the 3rd of the month and it still hasn't completely gone away. First I had the flu symptoms so I spent all of my time laying around on the couch and getting fluids at the hospital to keep me hydrated. Then I started having stomach troubles (aka puking) and still haven't gotten over that. The doctor thinks that it could be a side effect of the iron chelation drug (which I am still receiving 24/7). Throwing up is probably my least favorite thing but I will endure it if that's what it takes to get my iron levels under control. Silver lining to this crappy cloud? I've lost over ten pounds. The doctors aren't nearly as thrilled about this fact as I am.

Speaking of iron chelation, for those of you who have been following my blog you will understand this next portion of my blog. For new readers, you might have to backtrack a few blogs in order to catch up. So I've been doing the 24/7 chelation drug since I came home in december and initially the doctors said it could take several months (possibly a year) before my iron level would be low enough for me to get my transplant. This past week they checked my iron level and it has dropped significantly! To put it into numbers: My iron level was over 3,000 when it was checked in early december. I think it was like 3400 or 3600. That is craaazy high. Typically they like to see iron levels under 1000. They thought it would take a lot of the iron chelation to get my level to drop but right now my level is 1400! This is a huge decrease in a very short time! Hopefully this means that we can proceed with transplant soon (knock on wood).

Other than that, nothing really new has happened. I haven't done anything social for almost a month but I've been pretty distracted with feeling crummy so I haven't really had time to think about what I'm missing out on. This is a lackluster post but the iron news is definitely the most exciting thing that has happened in the past month!

Side note: Thanks to all of you out there who have been reading my posts! I've been getting great feedback and it's amazing to see just how many people care. Don't forget, if you want email updates every time I post, go to the lefthand sidebar and type in your email address in order to subscribe. This also helps me keep track of how many people are reading. Thanks! Hope everyone is having a better month than I am.

**Reason of the Day: A few weeks ago I decided that I wanted a change. My life has come to a screeching halt and I needed something to shake things up. So naturally, I dyed my hair red! :) . Turns out I love it. Taking a chance is always a reason to smile (RTS). **

Red Hair:

New Years

Dear readers,

It's officially 2010. This is important for several reasons. First, it's a new year and that's always important. Second, it almost (a few days late) marks the official five year anniversary of my diagnosis. Lastly, it signifies a much needed fresh start.

Like I said, a new year is always important. Why? I'm not exactly sure. Maybe it's the symbolic aspect or maybe it's the fact that it gives people the opportunity to feel like they're starting something new. It's a celebration of lasting another year in this crazy world. This year I spent my New Years Eve at home with my family. Shocker? It's the first time I've done that since elementary school but I wasn't expecting to even be in town and instead of dressing up and going out, I decided to lay low and enjoy my family.

The new year also holds a special importance because it is very nearly my anniversary of being diagnosed with Aplastic Anemia. Five years ago, my mom took me to the doctor on the day after christmas. This means that I've officially survived five years living with this monster. For me, new years is like that "start" line that you see in those racing video games. Every time you pass the start line, you don't slow down. Instead, you keep going and pray that the laps never end. Even if you're losing, you don't want it to end. Another lap means another chance to regain the lead and end up victorious. Lap six will be the hardest lap thus far, and hopefully ever. But it won't be the last.

Lastly, this symbolizes a fresh start for me. As I sit here deciding what to write, I find myself being afraid to say certain things. I never realized how far my blog would reach out. My readers range from teachers to classmates to nurses to family. I promised in the very beginning that I would write about the good, the bad and the ugly. Now I'm finding that easier said than done. This new year I promise to start being 100% honest. After all, this blog isn't for my readers. It's for me. It's my chance to tell my story and I want to do it the right way.

That being said, these past few days have been extremely tough. I have good days and I have bad days but lately, they've been bad. I've been struggling to get back into my old life. I don't seem to enjoy the things I did before I left. I can't seem to forget about all the fear and anticipation I'm living with. Getting within 24 hours of starting chemo can really do something to a person. When I got home, everyone (including myself) was fairly impressed with how well I handled things. I took a week to mope and then I was back on my feet. Then, a few days ago I realized that I can't just get over it. This isn't some bad test grade. This isn't some bad breakup. This isn't even some family crisis. This is my life. And right now, it's not looking so good. I find myself turning down invitations to be social and instead spending my time crying when nobody can hear me. I'm hurting. Nobody will ever understand how much. My mind, body, heart and soul aches. To make things worse, the people I trust the most are letting me down. I'm starting to remember how much hurt there is in the world.

I think experiencing what I've gone through has made me very sensitive to the rest of the world. For example, friends talking about college really hurts because it reminds me that my dreams have been put on hold. Obviously this isn't intentional but it hurts me. Another example, saying "I hope you die" takes on a whole new meaning to a person who has been fighting for five years to keep that from happening. We all say things we don't mean when we're angry but exactly how angry do you have to be to wish something like that upon ANYONE (not just me)? I won't disclose names or full recollections of these events because I have to protect the identities of these people, no matter how stupid their actions are. I can handle drugs hurting me. I can handle my disease hurting me. Hell, I can handle my own body hurting me. But I cannot handle others hurting me. Sometimes I wonder how people are even capable of being so hurtful.

I've never been very good at letting people see me when I'm weak. That's especially hard considering this disease constantly tries to make me weak and break me down. It's to the point where I would put makeup on and fake laugh when people would come to visit me in the hospital. I can't take sympathy or pity. That's why it's so hard to be honest about what I'm going through. This blog is supposed to be a great experience for me and I want it to be 100% accurate. Not all posts can be good ones.

So, that's enough downers for one day. Serious props to everyone who has the stomach to read my blog and digest the hard truth it involves/will involve in the future. Let's end on a happy note. Like I said in my previous post, I've been thinking a lot about Eleanor Roosevelt lately. I've also been thinking about other influential people such as Gandhi and the Dalai Lama. Reading their quotes and thoughts has helped me a lot. Today, one Gandhi quote stuck out to me.

***Reason of the day: "Nobody can hurt me without my permission."- Gandhi. Feeling empowered and in control of my own emotions in a time of weakness is always a reason to smile (RTS)***

This Too Shall Pass

Lovely readers,

I would like to start off by thanking everyone who has been supportive since my return from Minneapolis. Most importantly, my family for helping me to transition back into my old life and allowing me to sulk and take time to process the situation. Next, to my friends for never pressuring me to do more than I can handle. And for reminding me what it feels like to do normal things. They keep me sane and remind me that there is more to my life than being sick. Next, to my classmates. I cannot even begin to express how indebted I feel to all of my classmates for sending gifts, cards and prayers my way. Special thanks to my english class and Ms. Bonjour for taking up a collection to get me the BEST box of gifts ever. Before I left town, I made a list of things I thought would make my time in the hospital easier and they literally got almost every single item on the list- and more. Without even seeing the list. Their thoughtfulness is greatly appreciated.

I guess now it's time for an update:

I know I have not blogged in awhile but I needed a chance to get my thoughts together and decide how I wanted to proceed with the next few months. I have decided to continue blogging. My story is not over, in fact, my story has probably just become even more important to tell. I will not stop writing. I have also started my iron chelation. I'm currently infusing 24/7. The pump is actually pretty simple and fairly easy to hide for those who don't know it's there. I have spent the past two weeks really thinking things over and coming to grips with the reality of things. I know that I will be able to find strength in the people that surround me and I know that I will find strength in myself. I also know that other people will find strength in my story and I hope that my voice can be heard.

I have managed to get out of the house a few times since I have been home and even managed to attend a Gnarley Zombies concert. I did not anticipate how hard it would be to get back into my old life, especially knowing that I will have to leave it all again at any moment. I'm living in limbo and I don't like it. It makes it very hard to form new friendships or relationships and it also makes it very hard to plan. I've always been a planner, "living in the moment" is NOT my thing. I consider myself a free spirit but I also value every moment I have on this earth. I don't believe in wasting precious time. Knowing that I can't plan is going to really bother me. However, I think it might be good for me to take a break. Since I was in elementary school it was decided that I would become a writer and move to NYC. I've worked hard, despite all the obstacles put in my way, to achieve that goal. I've pushed myself, usually farther than it was healthy, in order to keep up and surpass others. Now that I know my life has literally been put on hold, there isn't much of a reason to push myself. I think I might take some time for myself and relax and maybe start writing a book or memoir or something of that nature. But lets not get ahead of ourselves, right now i'm thankful if I can manage to get out of bed, eat two good meals and shower every day. But, as they say, this too shall pass. And when it does, I know that I'll be stronger than ever.

Well, that's enough for tonight. Before ending, I would like to share this quote with everyone from Eleanor Roosevelt. Oddly enough, Eleanor has been a hero of mine since the 5th grade when I did a project on her. Come to find out, she died of Aplastic Anemia, the same disease that I'm now fighting. Crazy world. Eleanor represent an independent woman who took it upon herself to make a difference in the world. She surpassed everyones expectations and redefined what it meant to be a wife and a woman. She was a beautiful writer, wonderful speaker and amazing philanthropist. All qualities I wish to have some day. She says, "You gain strength, courage and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, 'I have lived through this horror. I can take the next thing that comes along.' You must always do the thing you think you cannot do."

**Reason of the day: Eleanor Roosevelt and her inspirational words are always a reason to smile (RTS)**