Heaven's Hell

Message to all of Lauren's Followers

2011-12-18T18:23:00.000-08:00

This is Lauren's mom, Annette. I wanted to let you all know that after 8 years, Lauren lost her battle with cancer on December 14, 2011.

Since her last post, she actually got to go on her honeymoon. Dan and she did an Alaskan cruise and had a wonderful time. She saw the running of the salmon and watched bear fishing the salmon. She saw a pod of whales fishing and eating (very rarely seen). She took a ride on a train that rode on the side of a cliff for 4 hours. She watched large chunks of ice fall off glaciers.

Lauren fought with radiation, chemotherapy and surgery since April of this year. She was a strong, loving, caring, compasionate, giving woman. She donated her cell line to NIH to be studied forever in the hopes that she would help find a cure for Ewings Sarcoma.

Prior to her leaving us, we spoke about establishing a foundation, in her name, that would help families of children with cancer be together during treatment at the NIH. She was very fortunate to have her family and friends around all the time, because we are local to NIH. She believed that having that support was an integral part of her treatment. NIH is only able to pay for the sick child and one family member to come for treatment. Her foundation will make it possible for both parents and siblings to join the child during treatment. We have named the foundation L-Dub's Love. (L-Dub was her knick name in High School and College).

Thank you all for following my daughters blog. It was cathartic for her.

Typical

2011-05-23T18:22:00.000-07:00

Hello out there!!!

Things have been a little crazy the past few weeks. I am sorry it has taken me so long to write this post. I guess it just gets annoying having to always "tell the same story" in my blog. The "story" being....everything is going great....everything is upside down....I love my life.....why is this happening again. Don't get me wrong, I am used to the roller coaster but I only wanted to go forward on the roller coaster, I don't need to see what it is like going backwards too.

I got the most perfect card from my friend Liz the other day. I wish I had it here with me so I could write exactly what it said. That will be my next post.

So needless to say, I got scanned and there were 6 tumors in my right lung. Now this was not expected at all, I just received radiation in February for a small tumor in the lower part of my right lung and I thought I would be in the clear for a few months. Think again. I had been having some pain in my ribs, I just thought it would be another small tumor that we would radiate and be done with. Turns out that within a month these 6 tumors grew and 3 are rather large. I was extremely out of breath and achy all over for a week or so but I assumed it was allergies.....because they have been CRAZY this year. I started chemo 3 weeks ago and I am already feeling better. I still get tired but nothing like it was. I will start my next cycle on Monday.

In the meantime I have had to stop working because I didn't think I could physically make it through a day in the condition I am in. Can I just say that I have the most amazing job ever though, they are ok with letting me take off like this.....and they want me back next year. I don't have a crystal ball, who knows what the fall will bring, but the fact that I still have the option to coach volleyball and teach in the classroom if I want it is AMAZING!!!

In the midst of all the craziness life throws at me, God has a way of making the important things turn out alright. We moved the wedding up and it was absolutely perfect.....I can't imagine trying to have a wedding in 2 weeks. I have found the most amazing love, through friends, family, and my husband. I have a job that I have always wanted. So while I might not be able to look at houses right now, or think of starting a family....I have the important things.

So I promise to post pictures of the wedding, I just need to be on my laptop to do it. I also can't wait for you to read this card because it is a great one. I will let you know how the next cycle of chemo goes and how my scans turn out. As always I will try to post more frequently; but as you probably know by now, I just am not very good.

Married.....what!

2011-03-02T20:04:00.000-08:00

Hello out there!!

Hopefully you have decided to stick out the drought and still follow me. If you are still out there....thanks!!! I know it has been a while as usual with my updating. I feel like I always do this. I am all about something for an extended period of time and it slowly fades. I am trying to get back into things though....and this is the start.

As you can see from the title of this post, Dan and I decided to get married. We were married on the 19th of February. Everything was absolutely perfect!!! We got married at a local Catholic church. I had met the priest during a mass at school. He instantly spoke to me and he makes me want to go to church. He brought meaning to the mass for our wedding!! I don't think we would have had a full mass if we had not found a priest we liked.

We had our reception at a beautiful vineyard a little ways away. The ceremony was beautiful. The weather was perfect and we were able to open the doors at times and really feel we were outside. Everyone had such a good time and it was truly a celebration.

Though Dan and I wanted to wait until May to have warm weather and an outside reception, it was 70 degrees the Friday before our wedding and 55 on Saturday. Absolutely perfect! The vineyard was a perfect mix of wanting to be outside but having to be inside.

After the wedding we took a short getaway to Disney World. Which I had just been to for the first time about a month ago with my family. We went for a few days and did not nearly get to see everything. I have decided to make it a point to cross things off my bucket list and Disney was one. So we went as a family and it was a blast. I was lucky enough to get to go again with Dan for our mini honeymoon. We will take another trip.....to Australia....in the summer when we have off work. It was a great weekend/week. I did not want the fun to end. Family was in town, friends we hadn't seen in a while, all for this joyous occasion. But like all things....we had to go back to the working world and face reality again.

It is interesting when you get married. Society says a house and kids are next. Well I have never let myself think that far ahead, never really thought it was worth it. Now, those thoughts are definitely on my mind. I would love to start a family one day, and get our own place. I just can't help the responsibility to make sure Dan will be okay if something happens to me. If I commit to renting or buying a place to live with Dan and something happens to me, where does that leave Dan. If we start a family and something happens to me.....where does that leave Dan. It is a little much to think about really, so I don't yet. At least not until we look at our finances and see what we could actually do.

As you can see I am in a much better place then I was in December. Time has a way of doing this. In the end my doctors were hesitant to start the infusion treatment to prolong the leukemia because my counts were stable. I am taking a shot to help my white blood cells develop which will help me fight infections. As long as my counts are stable, there is not really any need to worry. I got the tumor radiated and as far as I can tell it has significantly shrunk. I had pain with it for a little while and now that is gone.

I took some time off work to get my head right with the news and deciding what I wanted to do with life. Time off to complete parts of my bucket list. I am still off work now, though desperate to go back. It made sense while planning a wedding, but now that the wedding is over, I don't have much to do during the day. There is no point in just sitting and waiting for my counts to drop; so I will do a couple mini trips to see friends and return to work in the end of March. I go visit the kids frequently, keep me going.

I will post pictures once I get them. I will also stay in touch better!!! Though the days aren't too exciting with nothing to do; perhaps having the blog will make me do something. We will see.

Thanks again for sticking it out!!

Ugh.....so close

2010-12-05T18:34:00.000-08:00

Hello out there!!

Been so long....I know.

It has been a little of a whirl wind the past couple weeks.

The Fall has been a blast; between volleyball and teaching, I could not have asked for a better life. Though volleyball season was extremely busy and took up way too much time....I still loved every minute of it. We ended the season 8th (out of 9 teams); but at least we were better than one team in the conference. I will need to find one or two more girls this winter to make this team what it can be. I am excited for the challenge.

As far as teaching goes, 9 days out of 10 it is perfect. The kids are great. One of my 5th graders said a rather insightful comment the other day to his fellow classmates - "I don't need to know how to skip in baseball.......we just have to run". He has some issues skipping and he justified it perfectly.

My kids make me laugh constantly. However, I have to contain myself so the class can stay focused on what I am trying to teach them. Sometimes you just can't help but take a laugh break.

I told my middle school students about my situation. I thought it was the right thing to do because they ask questions about why I need eye drops, or about what my tattoo means, and other little questions. I prefer to be open and not have a huge secret like this. So the conversation went well. I brought the 7th and 8th graders into the same room and talked to them together. I enjoy telling my story and working out the kinks. If I want to someday be a motivational speaker I have to start somewhere. They took it well and asked lots of questions. Of course when I told them my situation we were working on one year tumor free.........if only I had a crystal ball.

When I got my scans in November we discovered something that I hoped would not come for a long time. I was neutropenic (my blood counts were low, specifically my white blood cells). This is not good because I have not gotten any treatment in about a year. As soon as they told me that I was neutropenic I knew it could be leukemia. I asked the doctors if they thought it was that. They said that I did not present the typical symptoms for leukemia but that they were nervous that I had something called MDS; Myelodysplastic Syndrome. This is an issue with your bone marrow where the cells do not develop normally. This is a typical precursor to leukemia.

So what do we do. The typical treatment for MDS is a bone marrow transplant. Being that I have had a transplant in 2005, it is not an option for me. There are too many possible complications. The next option is to do an infusion treatment that is once a month for as long as it is working. This infusion is a medication that could prolong the time before it becomes leukemia. The last option is to sit and wait; continue to live life as I am now and hope that this MDS decides to stay neutral for years instead of months. Every treatment I have gotten has a bell curve for the effectiveness; I have always been on the right side of that curve.......what would make me think this time would be any different. I decided to go with the infusion. I am not ready to sit and see where the cards fall. If this treatment does nothing, at least I would be able to know I did everything possible to help.

That is the kicker really.....that someday (be it months or years) this MDS issue will become leukemia. When it does I will have to get intense chemo and go through treatment all over. I am mentally ready for that battle but I sometimes question whether my body is ready for that battle. All I can do is try to stay out of my head and continue to live each day as I have for the past 6.5 years.

On top of this MDS issue....I have another tumor. The tumor is located on the bottom of my lungs. We will get it biopsied in a couple weeks to verify that it is Ewings and decide what we will do about it.

With this news.......comes an extreme choice to make. Do I continue to work or not? I love everything about work. The kids are great, my boss is great, my coworkers could not be more understanding. But what if I can't handle both......what if I do my body a diservice by continuing to work? The decision has been made to try the first treatment during winter break and see what happens. Worst case, I put in my 2 weeks after the first treatment........though it breaks my heart to have to think about quitting. It is just typical that this would happen when everything was soooooo good.

Dan and I have begun to plan our wedding again, and were planning on Memorial Day Weekend again. However, this news makes me nervous to wait until May. I have a bad feeling that we are pushing the envelope trying to wait until May. So we will talk to the priest tomorrow evening and the situation and see what he thinks. The wedding caterer could not be more understanding......which takes a lot of stress off about the wedding.

So I guess this is where I will leave you to digest for a bit. It has been extremely hard for me and my family. Somehow God has a way of allowing me to make it through my days without thinking of the situation too much. I am not a very religious person but I found myself subconsciously saying the Hail Mary the other day.......who knows; Dan says I was meant to say that prayer at that moment. I say, if God is on my side there is nothing wrong with that!

My Grown-Up Life

2010-09-06T15:03:00.000-07:00

I hope your still out there!!!

I can't believe how long it has been. I tend to make an unbusy life quickly become pure chaos. The last few months have been no exception. My life has always been a balancing act and I would like to think I have gotten pretty damn good at it.

Let me fill you in.

I ended the summer doing volleyball camps as usual. I was only able to help out briefly in 2 and 1 whole one. I really enjoy watching the kids progress throughout the week, and I couldn't help but think that this is what I was going to be doing a lot in the beginning of my coaching career. In the midst of the volleyball camps I had to make many trips down to southern MD between my teaching job and my coaching job. Luckily, the drive is not extremely long or bad. It did get exhausting though.

After all the camp craziness, it was time for teaching craziness. I reported to school and began to set up my classroom, meet teachers, have meetings everyday, and volleyball tryouts in the afternoon. I don't really know where to start there has been so much. So I will break it up into school and coaching.

School first.
Before the students came into the classroom, I was extremely anxious. How was I going to do a good job at teaching them science? I remember how much I loved science in school and I wanted to make sure that I gave the students the best experience possible. So I was getting ideas from other teachers; though most of the science teachers I was meeting at training were also first years so we weren't much good to each other yet. PE would not be a problem; it is my safe zone in the middle of what will be insane days.

During out teacher meetings we were talking about all the things we needed to make sure we did correctly, upcoming events, issues that were going on. I was completely overwhelmed. It was not longer the issue of how am I going to teach the kids.....it was becoming an issue of all the little things. Uniform checks, attendence procedures, am I going to get the milk count right so these kids can drink milk at lunch? I accepted the fact that I would have to get through the first week of school before I was really comfortable. Luckily, I have amazing teachers around me that are willing to help me whenever needed.

So the kids came to school, it was my first homeroom on my own, and their first day back from summer break.....needless to say it did not go well. I have 21 7th graders that absolutely love to talk. I had a planning period to reflect on what happened during the class and all I could think to myself was how I needed to lay down the law a little better. This is something I am not particularly good at. I believe that kids should be responsible for their own behaviors and understand that they should be quiet during class.........HHHHAA funny for me to think that 7th graders could or would do this. So this is something I am working on.

I made it though the first week......2 half days and 2 full days. By the time I got home from volleyball at 7:00 I would eat dinner and go to bed soooooo early. I guess this is how my life would be for the next 2 months.

As far as volleyball is concerned......I love my girls!!!! It is so great to have my own team. They work hard and are excited for everything they can learn. We had 2 scrimmages, we won one and lost another. I didn't really pay attention to the score because it was a learning experience for the girls. We also had our first real match agains Good Council.....they have won the conference for the past 5 years.....so needless to say we didn't do so hot. But the girls fought until the end and we scored 13 points one game. I am really glad we saw this team first because it was a good opportunity to see what we really needed to work on and where we could go from here. I hope the girls learned as much about themselves as I did.

This weekend was amazing weather and I spent the whole weekend planning lessons for teaching........a fact of life at this point. I figure the more I get done now the less I have to try to do during the week. The next unit for each grade is much more interesting than the first unit was. I am so excited about what I get to do with the kids!! I am loving teaching science and look forward to the year.

I know that this is just a catch up and does not include the juicy details of work and play but what would you have to look forward to if I put it all in one entry?

I will leave you with this.......I intercepted my first note the other day!!! It read:

"I'm sorry to have to do it this way, but we can't be together anymore. My mom is making me break up with you....well I don't really know why....but we can still be friends"

I was heart broken. I thought to myself that maybe they were supposed to stay together and that is why I got the note. funny!

I hope your falls are great!!!! I will make a great effort to update more often!!!!!

The Next Chapter

2010-07-01T07:43:00.000-07:00

Hello out there!!!

Alright....so summer has blown by so far and life is great.

I turned 25 and had a big celebration with my girls. It was also a 6 month tumor free party. We got a limo and went to Federal Hill. It was a really fun and special night. I look forward to celebrating 1 year!!

As far as what is next for me, LIFE. I am moving into the next chapter of my life; separating a little from this whole cancer bit. It is hard and scary but I have to just jump in and accept whatever happens along the way. I know I have talked about not letting myself get too excited about anything and keeping somewhat of a wall up about my cancer; but how can I not move on and celebrate at a time like this. If something comes up we will deal with it and keep moving forward.

So what is this next chapter you ask......I will teach at a Catholic middle school down in Southern Maryland. I will be teaching PE to 4-8 graders, and science to 6-8 graders. I am extremely excited for this job.....and nervous as hell. I have never taught science, I love it, but how can I make sure that I am doing these kids justice. I hope that I learn fast and that there are many activities in the curriculum already that I can follow. I will also be coaching at a Catholic high school that is in Leonardtown. I will be the varsity coach and pretty much build the program from scratch. It is a situation where they have had a new coach every year for the past 4 years so there really isn't any structure or anything. This team will be my baby! I am excited for these challenges and only hope that my cancer understands how excited I am about moving on and accepts the fact that it can no longer be a part of my life. I need this.

I also got a new car...well somewhat. I purchased a 2003 Honda CR-V and I LOVE IT!!!! I have a new car, a new job (full-time)....and am really an adult now I guess.

So all in all, this will be a very exciting chapter and I can't wait to tell you all about it.

So Much Going On!!!

2010-06-11T12:03:00.000-07:00

Hello out there!!!

I can't believe how long it has taken me to write this entry. I hope you are still there!!

Well I got scanned and no one could have anticipated the results. I am still TUMOR FREE!!!! Can you believe it? 6 months. This is of course, the longest I have been tumor free since the start. It is amazing. I never thought I would get to this point; with what I have seen and been through. I was nervous approaching this scan because I had a pain around my left shoulder for almost a week before. I couldn't help but think it was a tumor; though I have been doing therapy on my shoulder and I also contributed it to a strained muscle. I was extremely happy to find out that it was the second one.

So now that I don't have to go back to NIH for a couple months...what will I do with my time. I am very good at filling my summers to the max. I will complete my last 2 classes during this summer. I am taking one now and will take the other one after.

I am in Wisconsin this weekend for my birthday. It is nice to get some one on one time with Dan. I don't know what is in store for my birtday....but I am sure I will not be disappointed.

Next week I will be running my first volleyball camp on my own. There will be about 13 middle school aged girls. I am really excited. I am used to working with this level of player when I am helping out at other camps, but now I am the one in charge. This volleyball camp is actually a lead into a potential job. The school, St. Mary's Ryken, needs a volleyball coach in the fall. They also have a PE teacher who will be retiring in a year or so and I would have a foot in the door for that job. It is crazy that I might have a career soon. I am so used to summer jobs and school it is hard to picture real world.

I also have another volleball coaching interview coming up on Wednesday. I do not want to say too much about it because I don't want to jinx it. I feel like things are coming together. I am happy to know that I will be able to be involved with a team next year....it would have been wierd not to be. My own team....strange. Sometimes I doubt if I am ready or not; I just have to do it and have faith that everything will go great.

I hope to take a couple trips this summer.... but as usual, summer is speeding by. I want to visit Jodi out in Cali. I have meant to go out there for so long now, it is time.

It is extremely nice to be able to make plans.....yet very scary at the same time.

The Sun

2010-05-19T16:33:00.000-07:00

Hello out there!!

It has been cloudy in Frostburg for the past week. Now this is not breaking news....it is often (always) cloudy in Frostburg. As I drive over the mountains to complete my trip back from home to school.....I see the ominous cloud above the little town. However, when it is days at a time people start to change. Slower, quieter, the happiest person in the world would get a little depressed. I need the sun, it is amazing how much my mentality is driven by the weather. Are you the same way??

This past weekend was amazing. Baseball had their conference championship tournament that started on Friday so I stayed at Frostburg a little longer to watch the games. We lost the first game which was not a good indication of how we would do by the end of the weekend. Frostburg played the next game, but it was cancelled due to lightning. I left for home. Erik and Shirley came to visit on Saturday. I will post pictures when I get them. We didn't do much, we had an amazing lunch at the house and went for a walk outside to enjoy the most perfect spring day. It is always nice to see Shirley; she gets me like no one else. We talk all the time on the phone but it is not the same as seeing someone. I hung out with my sister and some friends Saturday night and then drove back to Frostburg Sunday for the championship game of the tournament. We ended up losing in the second game but it was a great run.

So after the amazing weekend weather Frostburg went back to being gloomy and cold. It is hard to get motivated to do anything. I don't have my TV in my apartment because we took it home last weekend, so I have been catching up on Desperate Housewives online. Very uneventful. I think tomorrow is supposed to be nice weather again!! Thank goodness. I might go home tomorrow for a week before my summer class starts. It is a little hard to leave, this is the last time I will be leaving college....crazy. I can't believe this day has come. I am dragging it out as long as possible.

Come back sun and make the end of this week amazing!!!!

Real Life....ugh

2010-05-11T14:16:00.000-07:00

Hello out there!!!

Well the time has come. End of the semester; though I do have 2 summer classes to take. I will have completed the classwork towards my Masters in Administration and Supervision for education. I still have to complete a practicum (internship), but I figured I would do this while I have a job. I can not delay real life any longer. (though some would argue that I am living in the real world and everything else is just a routine).

I am at a major crossroad in my life and it overwhelms me every time I think about it. In my mind...and now my mind and body are in the same place (tumor free and a new hip), I am ready to move on, get a job, start a family, live. However....this is not the situation I am fully comfortable throwing myself into yet. I can't excape the thoughts of the next low in the rollercoaster of my life. How can I move on when something so heavy is always on my shoulders?

I am not ready to commit to a full time job. I want nothing more than to teach kids every day, but that is not as easy as it sounds. What happens if I get scanned in October....after I have been on the job for a couple months...and I have to get treatment again? Then I have to explain to my boss that I have to miss school every month for a certain amount of days....how can this work? One option that I am comfortable with would be to get a job in Maryland and if I have to get treatment, I could get it after work. This seems like the most practical solution that could eleviate most of the "ifs". I do not want to let cancer live my life for me....but I feel I can only separate from it so much.

I guess this is normal. I have had cancer now for 6 years and have never known anyone who has made it past 6 years. I am still trying not to "wait my turn". Luckily, things are still amazing!!!!! I have been going out with friends and living the last few weeks of college free of worry (well somewhat) and pain. The weather has been great....besides the fact that Frostburg forgot it was May today and decided to sleet and rain.

My great friend Shirley is coming into town this weekend to be scanned. She is bringing Erik and the babies. I am sooooo excited. I will get to see her on Saturday after I move some stuff out of my apartment.

I hope everyone is having a great week so far and I will be posting soon.

P.S. I did send in an application for a teaching job in Howard County.....and I am comfortable accepting a full time job if they offer it too me. All I can do is apply and see how things go.

Amazing Anniversary Weekend!!

2010-05-03T17:09:00.000-07:00

Hello out there!!!

This past weekend was mine and Dan's 6 year anniversary weekend. It had been an extremely long time since I had seen him (not since my hip replacement). This would be the first time he had seen me walk and how well I am doing. We had plans to go to see a concert in Atlantic City, then drive over to see some friends in NY that we would have seen at the wedding. A jam packed weekend!!

We ended up leaving around 12 on Friday for Atlantic City to see Paramore. The drive didn't take too long, about 3 1/2 hours. When we got to our hotel there was a little confusion about the reservation....but it eventually got settled. We didn't have much time until the show so we grabbed a quick bite in the Trump Taj Mahal before the show. The whole concert was general admission so we wanted to make sure we got a good seat.....turned out every seat at this venue was a great seat. We had bleacher seats and sat in the front row, behind general admission standing!!! The concert was amazing!!!! I would definately suggest getting out and seeing Paramore. It is funny because we didn't know who was opening for them and it ended up to be such a treat. Relient K opened up for them.....I had been listening to them all week on Pandora, it was a little 2 for 1 deal!!

We didn't gamble much in Atlantic City due to the fact that we are both a little broke. I did however triple my $5 in the penny slots and cashed out....always a winner. My winnings were spent on our late night soft pretzel after the concert. On our walk back to the hotel there was a dance party on the board walk that started with a wandering man dancing to the music who was then joined by a group of girls walking by. This no doubt, made his night!!!

Saturday was an early morning, we were going to meet our friends to take a 12:00 train into New York City. We made it just in time. It was pretty great weather on Saturday!! We walked around the city with a general idea of where we wanted to go. I love the city and have been there a good amount of times. Dan however, had never been to the city.

We walked to:
   Bryant Park
   Rockefellar Center
   Radio City Music Hall
   5th Avenue

We almost went to Times Square but we had hit our wall. This was also the same night they found the car bomb in Times Square. We were out of the city about an hour before they found the bomb.....but it is still a little crazy to think about.

We came back to our friends house and went out for great drinks, company, and food. It was really nice to see them again. I hadn't seen them in about 2 years. It is great to see how they and their lives have changed since their baby has come along!! Sunday was Rian's baptism. It was a beautiful service and I was extremely happy to be a part of it. We had a cookout yesterday afternoon and enjoyed the beautiful day.

But sadly.....the weekend always comes to an end. Our drive back from NY last night took about 6 hours and we were exhausted by the time we got home.....especially because I knew I had to get up early to take Dan to the airport for his 7:00 am flight. Luckily I am a morning person and this really isn't a big deal.....but between driving in the dark, the rain, and not having much sleep....it was a tiring trip. I came home and took a long nap before driving back to school.

School is almost over. I only have a couple more assignments to finish, I could not be more ready. Dan will fly back out for my scans in the end of May; which will also be the weekend we were supposed to be getting married...typical.

For Love of Music

2010-04-26T15:29:00.000-07:00

Hello out there!!

Today has been a great day. I just want to say how much I LOVE Pandora!!! If you haven't discovered it, it is amazing. I love finding new music and artists. A big part of my life is music. I listen to music for many reasons; to match my mood, to cheer up my mood, to escape from life, to get inspired, and any other reason you can think of. I haven't gotten any new music in a while, but today I rediscovered some favorite artists!!!

Today I discovered a band called Cartel. They are great!!!! Similar to a lot of bands....nothing really stands out, but I love it. I often try to find bands with instruments that are not typical; OAR, Yellowcard, Something Corporate, etc.

In case you were wondering, here are other bands I rekindled my love for:

- Dashbboard Confessional

- Relient K

- Taking Back Sunday

- Augustana

- All Time Low

- The Fray

.......and so many more

Check out these bands if you want to have a relaxing, up beat afternoon.

Also, if you can suggest any bands/artists. I love all sorts of music.

I guess what sparked my interest in music today was that this weekend Dan and I are celebrating our 6 year anniversary and we are going to see a Paramore concert. I downloaded there new CD today and it got me thinking about other music. I will definately post about the weekend.

My mom told me the other day that she couldn't post a comment because she didn't have an account. So I changed the settings to allow anyone to post. If you have had a problem in the past....it should be gone now.

Life otherwise has been pretty uneventful. I have had a lot of school work these past couple weeks because we are coming to the end of the semester. This equals the best time ever and the worst time ever. It is extremely hard to get motivated to do work with my new hip and amazing spring weather. I just want to tell my teachers "you don't know what I have been through and I don't want to do any more work for you, I just want to have fun." How do you think they would respond......maybe they would say OK???

Caps game tonight!! I am hoping they play better than they did on Friday!!! It is time to close this series out and kick Montreal to the curb!!

Anniversary!!!!

2010-04-19T17:22:00.000-07:00

Hello out there!!!

Six years ago, today I was diagnosed with Ewing's Sarcoma. I thought I would start the entry from an excerpt from my first enrty on this blog.

"It was a few weeks later. I was eating pizza in my friend's dorm and reality struck again. I had been coughing up blood all day...don't freak out, it really wasn't that much. I just knew that it wasnt' right. I called my mom to tell her; which was strange because I am usually the kind of girl who would say "it will go away tomorrow". Mom of course was paniced. She asked if I had smoked anything....of course NOT TRUE. She told me to go to the ER right away. Disgruntled and scared, I did. My friends waited there with me...which was about 3 hours by the way. I eventually got a chest X-Ray and that is really when my world turned upside down. There was no more naive Lauren, no more "nothing will happen to me", no more being 18. The doctor thought I may have cancer. My friends came into the room to console me, but they were boys and were completely thrown off guard when I was crying. I called my parents and they came to the hospital (1 hr and 45 mins to get to Frostburg....normally 2 hours). I stayed in the hospital overnight. In the morning they did a full body CT and that is when we found the tumor in my right butt muscle. I also had over 15 tumors in my lungs.

My world was spinning. Life was a blur. What was in store? What was going on? Why Me? Why?"

It is truly amazing to see where I am at today!!! I have certainly been through it all. Loved and lost many....but here I am. I don't know if I would change the person I have become because of my diagnosis. I wish it hadn't taken cancer for me to become the woman I am, but I love her. I look at life in a way that every one should. Relationships are the most important thing we have on this earth. It doesn't matter how much money you make, or any of the material things we collect as we live. It is the friendships and the experiences we have that make our lives worth living. I look forward to many more years. For now, I look to June for my next piece of mind (that's when I get scanned again)

Why Does Insurance Always Get in the Way?

2010-04-14T10:10:00.000-07:00

Hello out there!!!

May 29th was approaching fast. Dan comes around about once a month so to try to plan a wedding with him being far away was getting to be a little much. It was getting to the point where we weren't even sure how many days he could take off for the wedding and honeymoon. The wedding would be on a Saturday, Dan was going to fly in on Wednesday and then we might have only had 4-5 days for the honeymoon. Also, we weren't sure what would happen with out lives. We were only going to do a commitment ceremony so that I could stay on my parents insurance. Because I can't support myself, I am covered until I get married.....which is not something that can't be taken lightly. So we were going to have a big ceremony and spend all this money...and nothing would change. Dan would go back to WI and I would stay here to finish my summer class. We decided to postpone until next May. By then, the health bill will be a great help and we will be able to be in the same state. Though it is sad to not be planning a wedding, I know it is better for every one.

Since I have gotten my new hip things have been amazing!! I can do whatever I want. Dan and I have planned a weekend to Atlantic City. We are going to go see Paramore on Friday night and then drive to NY to see a couple friends who we would have seen at the wedding. It will be really great to hang out somewhere other then my parents' house or his parents' house. I can't wait and the time could not pass fast enough!

As usual, I am getting spring fever and finding it extremely hard to stay focused on school. I only have a month left until summer....but there are still a good bit of assignments to get done. Motivation does not come easy!

I want to take this opportunity to thank my followers. I started this blog about 6 months ago now and I know that it has been a mix of emotions, but my 15 have stuck it out!! Though you don't leave comments very often, I know you guys are reading!! I hope one day this blog will reach many other people.....but I wouldn't be anywhere without my 15. I hope that this blog is as exciting now that it is caught up. We will just have to make it exciting huh?

Highest Point on this Roller Coaster

2010-04-12T16:06:00.000-07:00

Hello out there!!

There I was....lower then low. Christmas came and I couldnt get my hip replaced because I was going to start chemo. The doctors wanted me to wait until after Christmas to start the chemo....but then I wouldn't have felt good for New Years. I decided to start chemo the week of Christmas.

This chemo was by far the hardest group of medicines I had gotten. The drugs tore up my stomach and made me nauseous and have horrible bowels. Detailed I know....but when you have been around this stuff for years, describing your symptoms really is no big deal. The chemo really didn't catch up with me until I was almost done with the 5 day cycle; then I would be bed ridden for 2 days. I would get 2 weeks off and then start all over. New Years was not a very exciting holiday; I would eat when I was hungry but eating would make me sick....horrible cycle. About midway through January I was done with the 2 cycles of chemo. The doctors would wait a few weeks and then scan.

I returned to school to begin my last year semester in grad school. Time was definately flying by. The only negative was that Dan took a job in Wisconsin so that he could have a job with benefits and a salary. He works at an indoor baseball facility scheduling tournaments and doing lessons. It is REALLY hard to be away from him, especially since there is so much up in the air with my cancer. I told him that if he wants to go he has to come back for anything important and at least once a month. I know this is what needs to happen and I will be able to join him when I am done with school.

It was time to be scanned. The scan showed that there was no change in the tumors. This is a great thing!!!! Though it would have been nice to see some shrinkage, no reaction is good too. The doctors returned to the original theory about this maybe not being cancer.....so we did a biopsy. It took about 2 weeks for the results, which was not typical and drove me crazy, but the results could not have been better. It WAS NOT CANCER!!!!!!! I knew deep down that it was never cancer....but what else could it have been. Turns out that it is a fungal infection from all my lung surgeries and tubes in and out last year!!!! AMAZING. I was completely happy....nothing could go wrong. I was tumor free!

A couple weeks later I got a call from my nurse saying that I should get my hip replaced.....I scheduled the surgery the next day. I did not want to let anything make me miss the opportunity to get my life back. The pain was unbearable by this point....so I would get a new hip in 2 weeks.

I had my hip replaced on March 10th. I was instantly better when I woke up. Walking without pain, climbing stairs, anything I wanted to do.....the world was mine again!!! Getting my hip replaced allowed me to "not have cancer anymore", I was winning the battle now! Before, the pain was a constant reminder that my life was not mine anymore...and I was just living through it. Rehab has gone perfect!!!! I really don't think I can get any happier. If only Dan were here to see it. The weather is getting perfect and I am free to go wherever my little heart desires!!!! SOOOOOOOO NNNNIIIIICCCCEEEEEE!

I only wish my granddad was here to see me. I know how much it bothered him to see me with a cane and in so much pain. Though he is the reason things are going so perfect right now!!! He is my direct connect to the man in charge! I know he is watching.

Ultimate Low

2010-04-09T20:23:00.000-07:00

Hello out there!!

Thanksgiving, family, scans.

Thanksgiving was a little different this year because I did not see my family. Usually Dan and I switch houses halfway through, but the timing was too close this year. So, planning for my hip surgery in December, I spent Thanksgiving with his family and would spend Christmas with mine. We spent 3 days down at his house. I always love going there because I get a break from the hustle and bustle of NIH and home.

After Thanksgiving, before I returned to school, it was time to be scanned. The results turned my world upside down. The pet scanned showed I had something between my right lung and heart. The area that lit up was about 6 inches long and was mind boggling. The doctors weren't sure what it was. I never was convinced that it was tumor. Ewing's does not usually go into the lymph nodes. The doctors decided to test for all sorts of infections and see if anything came up. When I left the room after hearing that news....I was lost. Everything I have seen (with other patients) has brought me to this point....when it was my turn. I could not escape the thoughts. Usually when I get in my head I can flip a switch and go to something positive.....there was nothing. I now had new tumors outside my lungs and right next to my heart.

I had to return to school....try to finish the next 2-3 weeks. I could not focus on anything. I was waiting for my cultures to prove that it wasn't tumor....holding on to any hope I had left. Ready to burst at any moment. The doctors thought that it would be too difficult of an area to biopsy, so all we had to go off of were these tests. Nothing grew....no crazy infections, nothing but cancer. By the time the tests were done it was almost time for winter break, we decided that I would start chemo during break and be able to get 2 doses before I return to school in the spring.

Of course....when I didn't think it could get any worse....it did. I got a call from my cousin at 5:00 in the morning on Wednesday, Dec 9th, asking if I had heard anything from my mom about my grandfather. I immediately called my mom and she explained that he had had a major brain bleed and was in the hospital in a coma. Her next words were "it isn't good". Meanwhile, Frostburg had the first ice storm of the year....and we were a little snowed in. I had to get home. Dan shovelled me out and me and my cousin drove home. 2 and a half hours later I was walking through a hospital not as a patient...but as a victim. I walked through the door of his room and it was like I hit a brick wall. There he was, lying on the bed, hooked up to tubes. I couldn't handle it...but I couldn't leave. Drawn to the fact that I could still hold his hand...that he was still in the room....that I had to say my goodbyes.

Let me take a moment to tell you a little about my grandfather.

He was amazing!! Most people know, there is nothing like grandparent's love. Mine are no exception. Granddad always told it like it was, and a relentless sweet tooth (which I now carry on). The springs would bring golf and gardening. He shot his age...77...a couple times actually. He was one of the most influential people in my life. I could talk about him for hours. He passed away on December 12th, 2009. I still wake up thinking he is here.

Our family is strong....prepared. We are used to battling through tough situations. Would this be different? Would this be too much? I was numb by now, not really able to imagine things getting any worse. I told God that if he was planning anything else for me, to please give it to me now because I couldn't get knocked down more. Things will always be hard, time does not make things go away; we just adjust our lives. Whether adjusting means blocking the bad stuff out, or just staying distracted.

But...as the pattern of my life goes....where there are downs...there are always ups. Little did I know what work Granddad would do up top!!!

New Treatments....New Success

2010-04-05T17:49:00.000-07:00

Hello out there!!

As I ended my previous post....it was time to be scanned. This is never a time for cheers, always nerves. Not the nerves that would come over you in front of a large room, these nerves are deep, a deciding factor in your future. Each scan means more and more. I used to not think about scan day much; but the more I go through the more they matter. I have not met anyone going through Ewing's Sarcoma that has metastasized live more then 6 years. I know this is not a pleasant thought....but it never escapes my mind for long.

The fact that it was almost 5 months since my lung surgeries, this scan would be an indicator of what we were dealing with. The scan showed there was a small tumor right near the scar tissue of my partial lung removal. This was frustrating because when originally planning the surgery the doctors were going to remove the entire upper lobe, but recent scans made them think they could get away with only removing part of the lobe. I can't blame them, it is always better to remove less....especially in the lungs. So now the question is, what do we do about it? The doctors decided that in order to get me back to school we would put me on a low dose of oral chemo until we decided what to treat the tumor with. There were no side effects of this pill and it was a great solution, but would not be enough to get rid of the tumor.

We knew about this cyber knife radiation at Georgetown Hospital, but weren't sure my left lung could receive anymore radiation. The doctors at Georgetown said that they would definately do it. I was so excited because my tumors respond really well to radiation. Because so little healthy tissue is effected with this type of treatment it was a great find!! I got the radiation in October and did not feel any side effects at all. I was a little more tired but it is always hard to tell if it is the pain from my hip, the oral chemo, radiation, or living each day like a normal person. The radiation was completed over 1 week, one session a day. This machine was the coolest thing. It adjusted itself to my breathing and attacked the tumor from over 300 angles. Amazing really!!

I returned to school for my second semester in graduate school. It was volleyball season and we could not be better this year!! The girls have done so well and it is a pleasure coaching them. Hard to think this would be my last year with them!! I have been around Frostburg Volleyball for so long now, I don't know what I will do with all my time in the Fall. I guess I will have to find my own team.

A major milestone took place this Fall. Dan and I moved in together!!!! We decided that since he did not know what he would be doing, job wise, after the fall semester, it would be silly to commit to a year lease. People told us all the cautions and things to be prepared for. I think once you have dated someone for 5 years, you should be pretty familiar with their habits and little quirks. Dan and me and no exception. Living together with him for this semester was HEAVEN!!!! I could not imagine anything more perfect. I got to see him every morning and every night. We would have dinner together and go shopping together...things a typical couple does. I really can't think of anything else to say about it.

Time went on as usual, and it was getting to be time for the holidays. We would wait until it was almost 5 weeks after radiation to see what was going on with my lungs, though my body will still make progress up to 6 months after radiation.

I don't think anything could have prepared me for the months to come. I will have to make it another post in order to not overwhelm you with reading.

Summer Under the Sun!

2010-03-29T18:12:00.000-07:00

Hello out there

School was out, weather was warm, surgeries were healed. It was time to take on my next challenge, removing the tumor from my right glute muscle. My right glute muscle was the site of my original tumor and we treated it with radiation in October of 2004. There had been no sign of tumor there until I got a pet scan earlier in the year. It was a shocker to us all. To see that the original tumor had activated again made us all a little nervous; the doctors said it is expected that sometimes the nucleus of the tumor to reactivate. I would have to go outside of NIH to have the procedure done.

I had the tumor removed by the amazing Dr. Wodajo at INOVA Fairfax. The tumor was about the size of a walnut and intertwined within my nerves close to my pelvis. This would not be an easy surgery. It took Dr. Wodajo about an hour and a half just to find my tumor, but 2 pints of blood later it was out. Dr. Wodajo was not able to get clear margins because it would have effected my nerve; which is practically impossible to heal. All we could do now was wait a couple months to get another scan to see if anything lit up. I was out of the hospital in about 3 days and just in time for my birthday.

When I think about my birthdays over the past few years, there is not much to remember. I am always sick or getting some sort of treatment. I plan to go out on the town for my 25th no matter the situation I am in. We are extremely grateful for every year that goes by, I feel that we should have a big party to celebrate 6 years of fighting.

Dan had the opportunity to work in Texarkana over the summer with a minor league baseball team down there. We were all excited about the doors this could open. I was able to go down with his parents and visit him for a few days. I always love going to watch Dan coach. It is always a good show.

It was great down in Texas. Warm, sunny, and Dan was there. The summer had its moments of flying by as well as times when it could not be passing fast enough. I took a summer class and worked a couple summer camps for volleyball. And of course....Camp Fantastic.

This year at Camp Fantastic was one of my most favorite. I met amazing campers and will never forget the experience. I really needed the strength after the hellish year I had. Besides the beginning (getting engaged), 2009 had really been the worst year yet!! Hard surgeries, distance from Dan, and now I was using a cane for my hip. The a-vascular neucrosis in my hip had gotten really bad after my 2 lung surgeries. I began using a cane in the end of June. I probably could have used it sooner, but I did not want to accept it. In my mind, the fact that I needed a cane was an indicator that the cancer was winning the battle. However, it got to the point where I could not walk without it. The pain was immense, I was scanned and we realized that my bone had collapsed. I knew it would get to this point but I did not think it would be so soon. The next treatment would have to be a hip replacement; but this would require me being off treatment.

Summer was winding down and it had been about 2 months since my surgery, time to be scanned.

Fighting the Good Fight

2010-03-19T13:35:00.000-07:00

Hello out there!!

February came faster then ever. This surgery would be the first of 2 steps to get me tumor free. The procedure was a right lung video-assisted tumor removal. They removed 3 tumors laproscopically. Surgery went great and the healing process was not very long; one chest tube, which was only in there for about a week. Once I had been about 3 weeks out from the surgery it was time to have the March surgery. The March surgery was much more involved. The surgeons would remove a tumor from the bottom of my lung as well as remove half of the upper lobe. I did not know what to expect, but the fact that the other 2 lung surgeries had gone perfect....I thought this one would be the same.

I woke up from this surgery and was extactic to see that everything had gone great. However, I was supposed to exercise my lungs by breathing into a inspirometer.

Normally when patients breath into these things they are careful, gentle, and scared to really push themselves.....but not me. I, being the go-getter that I am, gave 110% when I did it. Of course, what happens.....I split my incision. This caused my lung to leak air while it was trying to inflate. My recuperation went from one big chest tube to 2 little chest tubes in and outside my lungs. Everyday it was a guessing game as to whether or not a tube would be adjusted. Really this was probably the WORST time ever. Every other day I had the tubes adjusted; which involved loopy meds and an operating room.

One time I ate breakfast, thinking that it would be an uneventful day in the hospital, when they really wanted to adjust a chest tube a little. I have never been in a more stressful situation then when I was on the operating room table with only minor local numbing medicine, getting a tube that is inside my body adjusted. The procedure never hurt, but it was 2 hours of pure panic waiting for the time when it would hurt like hell. I have never been the same since; actually kind of a baby when it comes to surgeries now. I just insist that they put me to sleep for everything!!

So weeks of tubes and uncomfort later, I was recovered. It was time to return to school and finish out the next month or so. Graduate school has turned out to be pretty easy adventure. Most of the classes are just based off case studies and real world situations. We no longer learn meaningless stuff that we will regurgitate onto an exam. We look at cases and decide what we would have done in that situation. I love it!!!

Spring means baseball season in my life. Dan is a college pitching coach who one day hopes to have his own team. Right now he coaches for a junior college close to my school. We see each other whenever possible, but springs are never easy for me. I find it hard to go through all this stuff without him by my side all the time. I understand I don't need him there for everything, but when he is there it makes such a difference. This is something that is a pretty big issue in our relationship, I think it is because we both want to be happy while making the other one happy. Either way, planning our life together when we are apart...is a little backwards. Sometimes I wonder if he puts the distance between us because he cannot handle the issue. Cancer is a lot to think about, and I have certainly been through it all, and maybe this is his coping mechanism. But where does that leave me? Am I supposed to wait until he can wrap his mind around the fact that my days are invaluable and that they should be spent with the one I love? What is the alternative....having no one? I wasn't sure I was going to blog about this, but I feel that it is something that is relevant to any cancer patient. Having a relationship while having a terminal illness is stressful. I am grateful everyday that I have Dan; and he is the love of my life. But we have had our issues, this is a situation neither of us wants to be in. Sometimes it is important to see the story from both sides. Dan hates seeing me uncomfortable or in any pain. So can I blame him for not being there for everything, or be grateful for what he is there for. I have decided that it is best for my life to be grateful for what he is there for. Though it is hard, I understand where he is coming from.

With 2 surgeries down, all that was left was a little tumor in my right glute muscle. This would be taken care of in June.

The Engaged Life

2010-03-06T15:33:00.000-08:00

Hello out there!!

I was definately on cloud 9 now. Even though I still had tumors...nothing could go wrong. I was engaged a man who was everything I could have dreamed of. Smart, funny, tall, easy going, inspiring, strong (he can lift me up which is always a plus), warm-hearted, and any other positive adjective you could think of. The next couple weeks were the best ever because we got to tell everyone our news. There is just something about spreading good news for once that makes everything ok. It was a treat to be able to call Dan "Fiance". I know it is getting a little mushy so I will keep the rest to myself.

Winter break went by extremely fast. I still had tumors in my lungs and we needed to figure out the next course of action. We met with the doctors and considered all the possibilities.

Surgery...this option will definately remove the tumors
Chemotherapy...this may help them shrink, and maybe get rid of anything we can't see; but will probably not get rid of the tumors for good
Radiation...I can not get large area radiation because it is a high risk for my lungs. I have already had my lungs radiated and now that I have had a transplant, GVH in the lungs can be fatal

Once we weighed the good and bad we decided to go with surgery. We would do a video assisted laproscopic like surgery to get the tumors out of my right lung, and we will perform another thoracotomy on my left lung. The doctors had also decided that it may be in my best interest to remove part of my left upper lung. There had been an area that showed up on my scans that would get bigger and smaller, they were worried there was something they couldn't see due to scar tissue. So I would go back to school and get as much work done as possible, then I would leave to embark on my venture to be tumor free.

I had already had one thoracotomy on my right lung and it went great. I have a huge scar that runs along my shoulder blade and under my arm. Now that I will have the same procedure on the other side, Dan says that we can tell people that my angel wings have been cut off. Cute, right? I think scars are sweet and they let people know that you are somewhat of a badass.

People were nervous for me to have all this done in such a short period of time. My right lung tumor removal would be in February, and thoracotomy and partial lung removal would be in March. I knew that this was my time. Everything that I had gotten...all the chemo, the radiation, the transplant, the surgery, the antibody...it was to bring me here. To the point where everything can be removed surgically. I didn't want to get too excited or get my hopes up again; but sometimes, thinking that you are at the end of the road is what gets you through. Those thoughts somewhat cloud all the shitty stuff that you have gone through or are about to go through.

I got an Award!!

2010-03-02T07:15:00.000-08:00

Hello out there!

So I received this award from my friend Samantha yesterday. This made me extremely happy so I thought I would spread the love to one of my favs. I am passing the award onto my friend Juliana. She was one of my first followers and I think she is A Doll!!!

So I hope you enjoy it Juliana and thanks a ton Samantha!!!

This will be one of my favorite posts

2010-03-01T17:06:00.000-08:00

Hello out there!!

So now it was time for winter break. I had just finished my undergrad degree in Health and Physical Education; and it was time to celebrate. We decided that it was time to go on a cruise. It had actually been planned for quite some time now but we were leaving on January 11th!!!

The "we" of the cruise included my family, Dan's family, a few of Dan's Aunts and Uncles, and a few family friends. People were getting suspicious about the purpose of this cruise. Dan and me had been dating almost 5 years at this point and I don't remember one wedding where we didn't get the question "when are you two gonna tie the knot". I have never been one to pressure Dan in any way. I didn't really care about being married to him; we were already married in my eyes. I also have learned not to get too excited about things, for fear that they do not happen the way you picture them in your head.

So we left for a week long cruise of the southern caribbean. This was my first cruise, and the longest time Dan and me have ever spent together. I know what you are thinking....Dan and me lead very busy lives and though we see eachother everyday sometimes, it is never 24/7 for a week. It would be heaven.

The first day would be mostly plane rides and boarding the ship. We settled a little in our room and then ventured out to see what this boat was all about. We of course found the casino; Dan found roulette. Day 1 was all-in-all not so bad. The second day was a day at sea; so it was a formal dinner night. It was January 13th. We had hung around the pool during the day, ate lots of food of course, drank delicious drinks, and who knows what else. Then it was time to get ready. I love getting all dressed up; maybe this is because we really don't get a chance to dress up after we are seniors in high school...unless we are going to a wedding or something. So Dan and me had finished getting ready early so we went down to the bar to get a drink before dinner. He asked me if I wanted to go to the front of the boat to get some air. I suggested that since it was close to dinner time that we just go on the side of the boat; we were almost at the back. So we went outside to get some fresh air and enjoy each others company. However, we had walked out on the smoking side of the boat and cigarette smoke really grosses me out (this is another post entirely), so we walked to the other side of the boat. This is when it happens....Dan starts his speech....talking about how he had something of his grandmothers to give me...and that I could only get it on one condition.....then he got down on one knee......my heart stopped.....I began to shake.....and he asked me....Will You Marry Me???? I was in such shock that I forgot to respond at first, and of course I can't cry because I have no tears. I can only imagine what those seconds felt like to him...anticipating my response...not seeing any reaction one way or the other. Finally, I remembered to say YES!

Once we had come back to reality I had to go tell my parents. They knew that Dan would propose to me because he had asked them before hand. My parents and his parents were the only ones who knew though. So telling everyone was soooo exciting. We announced it at dinner that night. Now the cruise was not only a celebration of me graduating, it was a celebration of Dan and me.

We did many things on the cruise. We went snorkling, went on a high ropes course, toured a couple islands, played lots of roulette, saw an ice show, and a few other things. It was an amazing vacation!! We were all in need of a break; from work, from school, from cancer.

Things could not be going more right. But like I have said in previous posts, all vacations must come to an end, and the real world sucks sometimes. I can't wait to go on my next cruise though!!

Shout-Out Sunday!!

2010-02-28T10:26:00.000-08:00

Hello out there!!

Today I thought I would try something new. I have decided that every Sunday I will give a shout-out to someone who has inspired or supported me. Today my shout out is to my friend Jodi Carpenter!!!

She lives in Cali, on the beach outside LA. She is an artist who is absolutely amazing. I met Jodi when I was a freshman in college; we were roommates. We both played volleyball for our school. As the years went on we were best of friends. You know how some people come into your life for a reason; well Jodi was meant to be a rock in my crazy life. Jodi was an art major and when she graduated she moved to Cali to pursue her dreams. She worked hard trying to play AVP volleyball (the professional beach league), but it got to be too much. Now by day, Jo has a boring office job, but in her free time she makes amazing art work. I have the pleaure of looking at her artwork everyday but for those of you who have not heard of her....check her out; you won't be disappointed.

http://www.jodicarpenter.com/

Thanks Jo for your neverending support and shoulder!!! I look forward to when I get to see you in 2 months!! XOXOXO

Time Could Not be Going Faster!

2010-02-27T10:02:00.000-08:00

Hello out there!!

After getting 2 cycles of this antibody treatment it was time to get scanned. This treatment made my tumors shrink 25%...great right. Now the tricky part was keeping them that way.

As time went on, the months started to blur. School was busier then ever and I was living out of a bag. Back and forth to MN, and trying to keep up with the demand of my teacher internships. My tumors were growing extremely slowly...about 2 mm every 2 months. In my situation, this is a miracle. A treatment with little side effects and keeping my tumors growing slowly. I had the feeling I could do this forever. My internships were going great!! I student taught in the middle and elementary schools and I could not have had a better experience. My mentor teachers were so understanding and taught me everything they knew. Also, I love working with the kids!! It is this semester when I really get the itch to be in the classroom, and have my own students. But I still have a semester to go.

While in MN, I got to add more experiences to the list. Dad and me went to a comedy club. I had never been to one before! We got there late and had to sit right next to the stage.....problem if you don't want to get cracked on. It was a blast though. The next day we decided to go to this farm where they had goat things; meat, clothes, candles, and other things. Anyone who knows me knows that I like to try all different meats, and love them all. On the list so far are alligator, deer, elk, buffalo, and now goat!! So good!

During the summer, mine and Dan's life was forever changed. Dan's grandmother passed away. She was an amazing woman, always happy and ready to have a good time! It took a while to get used to her not being there; especially since Dan's family all live on the same piece of property. To look across the yard and grandmom's house and know that it is empty will never be easy. I never met Dan's grandfather; but I have been told that Dan is exactly like him. I know that grandmom is still watching over us everyday and will see to it that things work out how they are supposed to.

I returned to school for my last undergraduate semester!!! I could not believe it had finally arrived. My friends had already graduated, Dan was done with his masters, I was on my own. Though I was really too busy to notice. Still going back and forth to MN, coaching volleyball, and knee deep in my internship (which might as well be a full time job in itself). November was here before I knew it; and it was time to be scanned. See with this trial antibody, there are stipulations. Once your tumors have their largest shrink, they can not grow more then 20% larger then that. So as I was approaching November, I knew the time would come where I would not be able to get the treatment anymore. Once the results of the scan came in, it was confirmed. I was so mad!!! How can they kick me off a treatment that is working just because it had grown a little. All in all I think my tumors only grew about 6 mm over the whole year. I couldn't believe it; but these are the politics of experimental treatments. So I was no longer going to MN; forced to stop a treatment that I knew was the best for me. Although, not having the stress of going back and forth really let me focus on school. It was graduation time, portfolio presentation time, and it would have been too much to handle. I ended up graduation Magna Cum Laude and was ready to face the world!!! All my friends and family, even my nurse from NIH, came to watch me walk across the stage. This was by far the moment where all the struggling and stress paid off.

I did not know how I was going to balance "real life" with cancer. School works great with cancer because I can miss and not be accountable for anyone but myself. Everyone at school already knows my situation; it is safe. I do not have to explain to a boss that I need to miss every week or so for treatment, I don't know if I would be hired in the first place. So when I was asked if I wanted to be the graduate assistant for the physical education department and have an opportunity to get my master's degree for free I accepted. I would have to be in school for another year and a half, but it would allow me to still get treatment and move forward with my life. If there is one promise I made to myself throughout this experience it was to keep moving forward, and not let the cancer "win".

So for now I just celebrated the fact that I had graduated from college. I had made it through all the obstacles, fought the hard battle!! But as the next year progress, I realized that battle was far from over.

Christmas in Minnesota

2010-02-26T11:41:00.000-08:00

Hello out there!!

So it was now time for Christmas. However, this would be the first Christmas away from my family. I am such a family person that I was really sad that I would have to spend this holiday in the 12x12 hotel room that was our home. Mom had to leave in order to not miss too much work. While she was here though, we made our little christmas tree. I would call it a mix of a Charlie Brown Christmas tree and the art skills of the Wellers. I don't know where the picture is right now but I found these which I think give you a pretty good idea.

So imagine the mix....pretty sweet right. So this reminded us of home and it was nice to be reminded that it was the holiday season.

Dan came into town for Christmas; at least I will get to spend it with him. Once Dan got here we went to Whistle Binkies of course; and he loved it of course! It is not often that I drink in front of my parents but it was my Dad, Dan, and Me and the bar and it was a blast. We were all a little loose by the time we left and it was a great time. We decided to go visit my awesome cousins in Minneapolis for the holidays; turned out I would be spending it with some family. They have a cottage out in the country that we spent christmas eve at. We ate the best oyster stew ever and enjoyed each others company. We had a white christmas this year; didn't expect anything less in Minnesota. My favorite part about snow is just hangin by a fire and watching it, drinking hot chocolate. What a great day it was. Dan had to leave a couple days after Christmas and it was Dad and me again!!

In a way I am very grateful for this treatment in MN. Of course, because it is keeping my tumors in check. Most of all, it has given my Dad and me a chance to really bond. He is a man of few words and even if we do nothing all day in the hotel, we are still hangin out. It has really changed our relationship forever!! This would be why I believe so much in the saying "everything happens for a reason".

New Years was here so we went back to Minneapolis to party it up MN style. We went to dinner and saw an Elvis Impersonator!!! I don't know if anyone has ever seen one but they are very funny....this one was old and fat and thought he was the king himself. Just another thing to add to the list of unforgettable experiences. We came home a little early to hang out with the kids while the ball dropped. Once people had gone to sleep, me and my cousin's wife did Karaoke until like 3:30. It was a blast!!

I am always one to try new things...as you may recall from my first time at Camp Fantastic. Well this Minnesota adventure was no different. My cousins live a little different life then we can in MD so I did all sorts of snowy firsts.

1. Walked in snow shoes.....this is extremely hard and tiring

2. Rode and drove a snow mobile...did you know in MN they actually have areas on the side of the road where the snowmobiles drive; they have stop signs and everything!!

3. I went outside in -5 degree weather...really once you get below 10 degrees it all feels the same, you're numb either way

...I will continually add to the list whenever possible

So this was the first month...I couldn't believe how fast it actually went. I will come back to MN in a couple weeks for my next dose of antibody. In the mean time I get to go back to school for my last year of undergrad!!!! We will see how the balancing act plays out as time goes on.

If I Were...

2010-02-24T18:42:00.000-08:00

I have been seeing this on a lot of blogs lately so I thought I would take a little break from my story to tell you readers a little more about me! Enjoy.

If I were a month, I’d be May

If I were a day of the week, I’d be Friday

If I were a time of day, 10:00 (I guess because this is the time I wish I could wake up at every morning)

If I were a planet, Jupiter
If I were a sea animal, I’d be an eel

If I were a direction, I'd be East

If I were a piece of furniture, I’d be a comfy couch

If I were a liquid, I’d be chocolate milk

If I were a gemstone, I’d be an amethyst

If I were a tree, I’d be Japanese Red Maple

If I were a tool, I’d be a pocket knife
If I were a flower, I’d be a coral rose

If I were a kind of weather, I’d be sunny with a little breeze, preferrably around 75

If I were a musical instrument, I’d be a saxophone

If I were a color, I’d be yellow, because it always makes me happy...as do a lot of colors actually
If I were an emotion, I’d be surprise

If I were a fruit, I’d be a mango

If I were a sound, I’d be laughter

If I were an element, I’d be oxygen

If I were a car, I’d be a teal chevelle with white strips and white interior

If I were a food, I’d be crabs on a saturday afternoon, accompanied by friends and my favorite beer

If I were a place, I’d be the Florida Keys

If I were a material, I’d be fleece

If I were a taste, I’d be sweet

If I were a scent, I’d be vanilla

If I were an object, I’d be a card full of happy thoughts

If I were a body part, I’d be legs

If I were a facial expression, I’d be a smile

If I were a song, I’d be anything by OAR, really a lot of bands...how are we supposed to pick one

If I were a pair of shoes, I’d be wedge flip flops, a little lift for sexiness and still the desired comfort level

I look forward to seeing everyone elses "If I Were".

MAYO....here we go

2010-02-24T18:13:00.000-08:00

Hello out there!!

In order to make it to Minnesota we were going to need some help. My family would have to pay for airfare and hotel, along with whatever payments we needed to make to insurance. Entirely too much for a family of four, and a college tuition. So, without even having to ask, Dan's mom set up a donation for our cause. It was amazing, to put some word to it, how many people came to help when we needed them. I could never have imagined! I think the total raised by Nancy was about $7,000 dollars. What a relief. I feel horribly for those patients who end up not being able to get treatment because they can't afford it. What do they do?

We left for MN December 9th; the drive would take a day and a half. The drive was uneventful considering we only take like 3 main highways to get there. While driving through Wisconsin, the landscape was beautiful!! It was flat then all of a sudden a big rock would be shooting up from the ground...not a mountain, just a really tall rock, kinda like the grand canyon all by itself in the middle of a field. I would learn later this was the Wisconsin Dells. Me and mom wanted to take a picture but dad wouldnt turn around. You know me with pictures!!

Once we arrived in Rochester we checked in to the Extended Stay and were starving. The hotel recommended a place that could have been within walking distance if it wasn't below zero out. Little did we know that this place they recommended was the BEST bar I have ever been too!!!! The place is called Whistle Binkies!! Amazing. The atmosphere is a sportsbar cabin. They have free popcorn and a bar staff that is like your best friend. This bar lived up to the standard of "people in Minnesota are the nicest ever".

Mom and Dad came out with me for this initial visit. Luckily my Dad was retired by now so he stayed with me the entire month. Mom had to leave the next week and Dan would be out in a couple weeks. So it was time to enter the building that is MAYO. I was shocked and felt out of place. This building was absolutely beautiful...for what a building can be. Marble everything and lots of beautiful artwork, I felt like I should have dressed up for the occasion. NIH is so relaxed, doctors just wear white coats; at MAYO the doctors are in suits and ties. Once I came back to reality I was forced to stand in the long line that was admissions. For this trip to Minnesota we would have to use insurance for the first time in my cancer treatment. THANK GOODNESS. I can not imagine having to use insurance all the time, too many hoops. Luckily, my sister chose the insurance field and medical billing as her profession, and she could not be more helpful in this situation.

On a side note....Rochester, MN has a Super Target!!!! It was perfect and right across the street practically from our hotel. In that same shopping center there was a Mega-Digital Screen; whatever that means. Oh, and it was heaven having my primetime shows be on an hour earlier....I tend to fall asleep pretty early.

We decided that to pass the time between appointments we would go to The Mall of America (there were some days where all I had to do was get a blood draw). So we set out on our adventure! I have been there once before but my parents had not. Of course it is nothing but a mall that it is realllllyyyy biiiiggg. You don't really want to go there when you have no money because it just keeps throwing it in your face. We saw lego world, which I guess is pretty cool. Of course there is a rollercoaster that costs you $20 per ride, and a movie theatre that we did not check the prices for, and a lot of stores. Whoever designed this mall and selected the stores was pretty smart, most stores are on every floor. So for people like us who might only look at one floor, we are sure not to miss there store. And again be reminded about the fact that we are struggling college students with no money!! Fun.

Running out of Options

2010-02-23T17:35:00.000-08:00

Hello out there!!

October was here. Whether I liked it or not, it was time to be scanned. My tumors had grown to about 2.4 centimeters. I was terrified. See the benefit of living this long is that you are still living; but as you continue to try all sorts of treatments the list of options to kill the bastard tumors shortens. Surgery is not an option right now because there are too many tumors. I have 3 in my lungs. The doctors do not want to do surgery until they know that it is the last option. So the decided treatment was the antibody. I mentioned this in a previous post; we had been waiting on the trial to open at NIH but since it had not opened yet there was really no telling when it would open. The solution, get the antibody at the MAYO Clinic in Minnesota. Compared to NIH, MAYO might as well be across the country. When I first heard about having to go to MAYO for treatment I was extremely scared and upset. I was full of questions.

Would I be able to go back to school?
Will I ever finish school?
Will we be able to get it approved by insurance?
What if this treatment doesn't work?
Is this my last option?
What will the doctors be like?
...and more as I got deeper in my thoughts

I wrote a poem, because I write for therapy, about leaving for Minnesota but I can't find where I saved it. I will post it when I find it.

It is around this time where I am really thinking all the wrong things. A friend at the hospital, Maria, passed away. She was the sweetest little girl!! Also, another one of my friends was not doing well at all. I started to think that I was just waiting for it to be my turn. You can only see so much death before you start to get inside your own head too much. It was a great help to talk to my roommates about the Minnesota thing. We all know how talking about things makes them smaller. I didn't want to tell people that I could not stop thinking about my death because what would they say to that; they would be freaked out. There is a fine line between too much information and keeping my friends in the loop.

So once we did some digging, I got all my questions answered. I would be able to continue school and would remain on track to graduate in December 2008. The first and fourth month of treatment would have to be spent at MAYO but the other visits would only be for a couple days at a time. I could not be more thankful for my teachers; they allowed me to continue with school as scheduled even though I had to miss so much.

My friend Shirley had her baby!!!! A beautiful baby girl named Olivia. This was much needed good news and gives me hope. I will be excited to see the baby!

I report to Minnesota in December for the first visit; excited and nervous to embark on this new place and treatment.

A Birthday to Remember

2010-02-17T12:46:00.000-08:00

Hello out there!!

My birthday was coming up and things were going great.

When I had my stem cell transplant, one of the side effects was graft vs. host disease (GVH). This GVH caused me to lose the ability to produce tears. This really makes crying a site to see. Everything else is the same....I get flushed, stuffy, and full of emotion...and then nothing. No tears, no release, nothing. There the emotion stays, stuck inside, ready to be unleashed at any moment. To help with this no tear thing I found a place in Boston called the Boston Eye Institute. The specialize in GVH of the eyes. I went there and got these special contacts. They hold liquid between the contact and my eye. It is amazing!! Though I still have to use eye drops a million times a day...it is better than it was.

While we were in Boston we decided to go whale watching. This was the most serene, calming, experience. To watch whales just out in nature...doing what they do. Very cool! We saw about 5 whales that day. It is so calm on the water and all you hear are their blow holes. I will never forget this.

At this point in my life, most of my friends are graduating from college. However, I get the pleasure of staying in school for another 4 years. Missing years and semesters does not help my goal of graduating from college. Luckily, in my program most people take longer then 4 years anyways!!

Ah, and then it was here, my 22rd birthday, I know not really a special one but I got to spend it with Dan. We went to Busch Gardens; I had never been. We rode every roller coaster twice and had an amazing time. When I am with Dan the world of cancer disappears. If only there was a way to keep him around all the time. This is a battle that I will not talk about in the blog....sorry.

A little boring...but I also got all four wisdom teeth pulled. It wasn't too bad. I got to get put to sleep so I like that.

Things in the summer were overall pretty great. I didn't have to go to the hospital much. I was able to work, go to the zoo, a wedding, see friends. Continueing with the "normal" life just fine. Before I knew it it was time for Camp Fantastic, volleyball season, and back to school.

It was roughly 6 months since my last chemo cycle; and of course, time to be scanned again. After an amazing summer, a little of a vaca from NIH, my tumors were growing. I will still be able to return to school, and will be scanned in 2 months to see how fast they are growing. At this point, we didn't really know what the next treatment would be; so all we could do was wait for October.

Moving On...I'm Sooo Ready

2010-02-15T16:31:00.000-08:00

Hello out there!!!

Well I was one week away from the end of my chemo. I was really ready to move onto the next chapter in my life. I am now 22 and have been with Dan for 3 years now. Not saying that I am ready for marriage but I would like to at some point be able to have a life outside of NIH with my other half. How can I make any plans for my life when I am bound to a disease like cancer. Everything is always up in the air, and at the last second changes. I don't know when the last time I got a break for more then a month. ONE MONTH. Luckily, I have friends that are close and I live 15 minutes from NIH. I don't know how life would be if I was away and had to fly everywhere; though I do want to get out and experience the world. I will be done with the chemo in one week and who knows what will be next.

We found out that my mom has Lyme's Disease. She has really been out of sorts lately and this explains it all. So now on top of me having cancer, she has to fight her own battle with lyme. The doctors put her on all sorts of antibiotics. She feels different every day and it is hard to keep it all balanced. I try to help out around the house as much as possible but I never feel like it is enough. I wish I could just do it all to take the burden off my mom, but with both of us a little funky feeling, our lives have been put on hold. Living each day and time flying by.

A look into the future......

They have made a recent discovery with antibody treatment and Ewing's. This is great. It is the first new treatment since I was diagnosed in 2004. When I heard about the news I was ecstatic. This was the reason I had faught so long, the pot of gold. This is what will allow me to move on. The only problem....a trial had not opened at NIH yet. With my treatment, and the new discoveries, there has to be a trial somewhere that can accept you. Once drugs and treatments are done the trial phase they get approved by the FDA and become mainstream. I don't know how long it will be until this happens but I hope I will get on a trial soon. This new treatment is definately bitter sweet. I have watched so many people lose the fight; I can't help but think "if only they had lived until now". But there is a reason for everything.

A Little of the "Normal" Life

2010-02-15T12:36:00.000-08:00

Hello out there!!

Well it is March of 2007. Things could not have been going better. Chemo was a breeze; thank God. I was on cycle 4 of 6. My scans were showing that the chemo was working!!! It was time for a vacation. Spring Break with my best college friends.

My roommates and our crew went down to Daytona for a week. I was in a much needed break from the hospital. This was one of the best vacation ever. I had never done anything for spring break before so it was exciting. We found this great bar that played reggae music, that was where we hung out most nights. The flower was from Dan. We ran into the baseball boys who were on their spring trip. I was away, free of all hospital thoughts, it was a blast.

My friend Shirley was pregnant!!!! What a miracle. Shirley being pregnant was my hope for one day being able to have kids. This is something that has been in the back of my mind since they first told me. Though I am not ready now, I will someday have kids with Dan. I know that there are many ways to have kids, but really nothing can beat having a baby that is both you and the one you love.

Baseball season is always the hardest. Dan and I don't spend a lot of time together as it is with out schedules, baseball season just keeps us apart even more. This season was particularly hard because I was not at school. I really never like being away from Dan for periods of time. I am not an over-the-phone kind of girl. Luckily with my cycles of chemo, time goes fast.

I will be done soon with chemo and able to move on with my life.

Some pictures from this time....

2010-02-02T16:44:00.000-08:00

Dan and I are both sporting our Frostburg gear!!

my bestest!!

Ahh...Family, Holidays, Winter Break!

2010-02-02T15:55:00.000-08:00

Hello out there!

Well as time passes things always get smaller. It was now the beginning of December 2006 and I was feeling relaxed and energized to fight another day. Thanksgiving was great. Dan and I decided to do Thanksgiving separate this year because our dinners were at the same time. I saw him the next day for leftovers at his house. I still have a hard time thinking about not seeing my family on Thanksgiving. I have a break from the hospital until January...this is something that is quite a tease.

Christmas is my favorite season. It is a time to make presents and show people how much they mean to you. I have gotten a greater appreciation since I have had cancer. There is never a time that I don't embrace the opportunity to let people know how important they are to me. This is something to live by; cancer or no cancer.

Me, Dad, and Dan went to Wellsboro shortly after Christmas to visit. This would be Dan's first time meeting my Dad's side of the family. It was a blast. I love showing Dan off and to have him meet my cousins was really great!

Of course...I don't think I will make it through one entry without something changing in my cancer status. But the more I blog the better my chances I guess. It was now mid January and I had been scanned again. The results were....surprise....not good. This is typical now. I had 3 new tumors in my lungs. I was devastated. I never let myself think that the surgery would be the end of it, but 3 months later....really? The largest tumor was 1 cm....not very big but still. It was time to start chemo again. My hair had just gotten that great peach fuss length too. My chemo schedule had also changed to a regimen that will be too much for school. I decided to remove myself from the spring semester at Frostburg. Just another thing. The chemo cycle was 2 weeks on and 1 week off. I think deep down I knew I was ready for a break; just wanted to keep moving forward and not let the cancer win.

I went out to Missouri to visit Shirley and Erik. It was great. We did all sorts of things. I got to see a bald eagle up close. It happened to be their migrating season. There were sooooo many in the sky it was amazing. We went to an exhibit where I held a snake. I will post the picture soon. I was soooo proud of myself. Dan would have flipped (he hates snakes).

I wrote in my journal about how great my friend Kelley was during this time. We were talking 2 times a day some days. I thought I would write it for the world to see. Friends are what keeps me going. Thanks to everyone who sent me packages (jodi), or brought me ice cream and carebear stuffed animals (sarah). I am soooo grateful to have the support system I have.

Chemo, my dog, has learned many tricks now. I decided he should know how to "little bark" and "big bark". He caught on soooo quick. He really brings me so much joy. He is constant love and excitement. Maybe I will learn how to post some video on the blog so everyone can see his tricks.

There is a lot to look forward to. We are almost to the present day. It is now 2007 in the blog and we only have 3 more years to catch up on. We are at the halfway mark. Though the past 3 years have certaintly been the most eventful. I can't wait to tell you about them. Stay tuned!

Just Keep Swimming....Just Keep Swimming!

2010-02-02T14:45:00.000-08:00

Hello out there!

As you can see there is a new layout. I was getting bored with the other one. I don't know; I still feel that it could be a little more exciting. But either way; I hope people are reading.

Well the summer flew by as usual. Nothing too much to report on the treatment cycle. I finished my chemo around the middle of July. Of course hoping that this would be the last treatment. I went a while without writing in my journal during this summer so that makes me think that it was a pretty uneventful summer. Sometimes it is hard to remember what and when stuff happened. I find that I have begun to date my life as BC (before cancer), and now. But I am doing my best.

Dan had gone on a 7 day cruise. I was supposed to go with him but I worked a volleyball camp the week before and the week after the cruise was camp fantastic. This year right after camp fantastic I had to leave for school. I decided that to have a cruise vacation in the middle of that craziness might just be pushing the limits a little. Though it would have been my first cruise and a blast I'm sure; I prioritized. My mom would have been proud; then again she was probably the one who kept me in check with having too much on my plate in the first place.

So it was time for camp. This would be my 3rd year as a counselor at camp. I still get the same feelings about it...like a 5 year old on Christmas eve! This year I am working with 9 year old campers. This is the youngest age that I have worked with. One of my campers eventually earned the nickname M.I.A. Mia because she was always missing. I was co-counselors this year with a wonderful girl named Kelly. Little did I know what a lasting bond we would have. We were both bald and I think there may have only been a couple other campers that were bald at the time. Shirley and her husband Erik also came to camp this year; which is amazing. Camp is not only good for the campers. It is also sometimes a therapy session for counselors. I had an amazing conversation with Kelly and another survivor Hiedi. Heidi and I had worked together for the past 3 years and we were great friends. We talked about what we were going through and how hard it can be. Sometimes it takes one to know one; and other people in my life just can't relate. But once again...the week goes by faster then ever and it is back to the real world...or at least one version of it.

This year at school I am a Junior, taking 18 credits. I will only have 4 more semesters and I will have my undergraduate degree in Health and Physical Education!!!! I was scanned in September and saw that my tumors were active in my lungs. It had been a couple months since I had chemo. The doctors decided it would be best to take them out. So I had my first cancer surgery. They took 3 tumors out of my Right lung. Surgery went great, the only thing I was really nervous about was the epidural. I have never gotten anything like that before and of course I didn't feel a thing. I was recovered from surgery and back to school within a month. Little did I know what I was coming back to. Missing 3 weeks in the middle of the semester is never a good thing. I was swamped with work; and not necessarily in the best mindset to get it done. I found out before returning to school that my friend Sam had passed away. Sam was an inspiration to me and had been fighting longer than I had. This news really hurt. Luckily I still had my rock, Shirley. I try to stay positive but I am really holding on by a thread now. Between my work, having a terminal condition, being sore from my surgery, and it being cold and snowy.....I think this is a little of a low for me.

I have been told that in order to see the rainbow you have to withstand the rain. I am holding them to that statement. Holidays are coming now and I am sure things will get better.

Back to the Cancer Grind

2010-01-08T09:11:00.000-08:00

Hello out there!

Well I was in the thick of it. School, treatment, love. I was a juggler of many things. People would always say how amazing I was for doing school while I was getting treatment. The way I see it, school is the one thing in my life that I can control. I can control how well I do, when I turn things in, how much of a social life I want to have. In the world of cancer I have to accept the fact that the only control I have is how I handle it. I can keep my positive attitude and my fight, but in the end I have no say. School is also an amazing distraction; otherwise I would be sitting at home just thinking all day long. We all know what happens when we think about problems too much. So right now I am in the second semester of my Sophomore year at Frostburg. I had taken a class during the summer to try to stay on track as much as possible.

It was February now. I was bald, chubby cheeked, and a little bitter. I don't know who I was bitter at, but someone. My friend Sean passed away and the news hit me like an 18 wheeler on the highway. Around the same time I found out that my friend Melody, who was only 4 or 5, also passed away. I went through a period where I felt very quiet. I was in my head a little. Not necessarily thinking negative thoughts, but every time someone around you passes away it makes you think about your life and what the "Big Plan" is for you. Frostburg winters do not help to alleviate depressing feelings either; but spring will come.

April is a great time in Frostburg. The weather gets nice again and people think they are on the beach. Everyone is outside cooking, drinking, playing games. People are happy again, well I am at least. Dan and I are about to celebrate our 2 year anniversary. I can't believe it, I know it will go on forever. My family came down to Dan's for Easter and met the extended family. It went great. I think for every Aunt and Uncle Dan has I have one that is just the same. Our families are perfect together.

Small world story: My grandfather used to live in DC when he was a kid. My grandfather is 1 of 9. The oldest of his sisters, Merle, knew Dans grandmother. They actually lived a couple blocks away from each other in DC. Funny huh?

As summer approached I got the news that another friend, Michael, had passed away. The same Michael that I wrote the rap with. I had been preparing myself for a while. When we think about it the amount of people that have lost the battle in our lives it scares me and my mom. I get filled with these emotions and I have no way to release them because, due to my transplant and GVH, I have no tears. It really makes the crying thing hard to do. Everything else is the same, I get flushed, I get sad, my nose gets runny, but then when it comes time to release it all with tears.....nothing. So then the emotion stays...bottled up...ready to be released like Pandora's Box at any moment. It is actually another one of the most annoying parts of this whole thing...I would rank this number 4 on the list. In order to release the stress I have started to work out. It is really nice to get active again.

School is almost done for summer now. Only a couple more weeks. I am really looking forward to the time with my family and dog. Though I like to balance a lot at one time...who doesn't like a break for a couple months. I will work and make money!! Who knows what is in store with treatment for the summer.

Ah, The First Real Hump of the Roller Coaster

2010-01-08T07:16:00.000-08:00

Hello out there!

When I returned from my vacation it was of course time to be scanned. I can almost guarantee that when I am done with something really fun it is time to visit NIH. This would be one of my first experiences with this fact. The scans showed that there was a small change in the tumor in my glute muscle and that there was a tumor in my right lung. Of course this is not what anyone wants to hear after just having an amazing vacation...but it is our reality and we can't run away from it. This would be the first scan since my transplant in January and we were all hopeful that the transplant was my ticket free. This is one dip in the longest roller coaster I know. The plan would be to start this pill that would help with GVH, which is an effect of the transplant where my body fights my sister's cells, hopefully the pill will also have some tumor effect. I will return to school and get scanned again in September.

Though with a low, of course, always comes a high. It was time again for Camp Fantastic. This year was just as good as the first. I got to ride a hot air balloon for the first time. It was nice to see everyone I had met last year, campers and counselors. This is the first time they would see me with hair. Some of them didn't even recognize me, understandable. I was rejuvenated by the end of the week. Ready to take on anything life threw. It is amazing what camp does, and it is indescribable to people who are not there.

When I returned to school me and 4 of my girlfriends rented the most beautiful house in Frostburg. It was the perfect place to live. Close to campus, great deck, it looked a little victorian. I made new best friends in that house. I think looking back on it these were my most favorite years, living in this house. Nothing beats watching American Idol or Grey's Anatomy all at the same time in the living room. Our Holiday parties. I really would live in that house again if I had the chance.

I decided to play volleyball again. I can not just sit back and watch yet. Though from the first practice I could tell a difference. It took a little while to accept that I would not be the same player I was 2 years ago. I still was mentally the same player but my body was not quite there anymore. It was great to play with the girls again, though most of the girls I had played with as a Freshman had graduated. I was not able to play the last 2 weeks of the season...the most important part...because I was having lung issues. I remember very clearly sitting on the sideline at Penn State Behrend and not being able to do a thing about what was happening. We ended up tying for 3rd at the end of conference play. I had the privilege of being awarded Comeback Player of the Year for the Fall sports. There was a nice assembly and it made the whole season end on a great note.

I was put on a high dose of prednisone because of my lung issues. Doctors were afraid that it was GVH in my lungs, which is very serious. I was on the steroids for close to 3 months. My body swelled like that girl who ate the blueberry gum in Charlie and the Chocolate Factory, but my legs got very skinny. This was the most uncomfortable I had ever been. Again another low point on the roller coaster. This would rank in the Top 2 most horrible moments in treatment (number 1 happens a little more down the road). I have never been self conscious about my body and to have all these changes happen to it within such a short amount of time was unbearable. I always felt people staring at me...I would stare at me if I saw me walking down the street. Worst time ever!

My dog Chemo was the best purchase we could have made. He is 7 months now and I have taught him all sorts of tricks. He knows how to sit, roll over, shake with both paws, twirl in a circle, speak, and play dead. Amazing I know. He really helps this whole situation. Always there for a hug or a kiss, ready to play with anything that moves, and can put a smile on your face instantly on a bad day. Hopefully one day I will be able to get him to be a therapy dog; though he gets nervous around kids because they are always pulling on him or chasing him.

It is January 2006 now. Because I was on steroids so long I now have bone issues. I can no longer run, jump, or fall. These 3 things being vital to the game of volleyball. I have AVN, a break down of blood flow to the joints, in my hips. Though, luckily, it does not cause me pain yet. I will get a monthly injection to see if we can reverse any of the damage. I was scanned again and they showed that the tumors in my lungs are growing. I have started chemo again but will be able to return to school. I will return once a month to get my chemo.

Time for a Little Escape

2009-12-23T08:25:00.000-08:00

Hello out there!

Well I was about a quarter done with my transplant; meaning I was on Day 26 of 100. I had to wear a mask in public for 100 days after my transplant. I actually got pretty used to it; not that the masks aren't extremely hot like a steam bath. It was Valentines Day and Dan came down to celebrate the holiday with me. He decided he wanted to cook for me; he made his famous chicken parm. It was delicious. I set up 2 candles and some romantic music and we had a delicious dinner. Another great page to add to our scrapbook; I will give it to him for our one year anniversary. Our relationship has gotten a little strained over the past months. It is really hard to have a long distance relationship; but our love is strong enough to get us through. He is a great support but I would not mind at all if we saw each other more than once a week. I know we are trying our best to see each other but sometimes it doesn't work out.

Since I had gotten some chemo before my transplant all my hair fell out again. This time even my eye lashes and eye brows fell out. Very strange looking, but very easy.

As the transplant continued I got the feeling that I was more and more done with cancer. This was the longest time I had gone without treatment. We would try to see what the transplant could to. It was Day 43 and my emotions were very split. Though I still had to take antirejection drugs, and wear a mask in public all I wanted to do was be normal. Normal meaning have hair, be in school with my friends, see Dan everyday.

I did however decide to go snowboarding again. My sister and I went with another friend. I had this feeling in the back of my head that if I fell, it would make my tumor grow again; really not the case but can you blame me. I had a blast. It was just like riding a bike. My sister however sprained her wrist. Maybe we should just avoid the snow for a little until our luck comes back.

It was now April. I decided to ask my parents if I could have a dog for my birthday (in June). I had seen a dog at NIH a couple times now and had fallen in love. The dog was a cavachon named Sophi. I knew this was the dog I wanted. I went to the same breeder that the dog owner had gotten Sophi from and found my little companion. He was extremenly playful and had an amazing potbelly. It was love at first sight. I decided I would name him Chemo. Some may think this is really sick but now whenever I think of chemo I will think of my dog instead of the nasty medicine.

It is interesting this life of cancer. There are many ups and many downs. The ups have a duty to outweigh the downs or else who knows what will happen. I have been dealing with this disease for a year now and have made many close friends who know exactly what I am going through. It seems that people all around me are losing the battle. This only makes me think about my turn even more. This is a dark side of this disease that they don't tell you about when you are first diagnosed. To a certain extent it may be better to not meet anyone else. But then I wouldn't be me. I will continue to provide as much positive energy to my friends as possible and will support them to the last day.

Like I said, time for an escape. I was granted a Make A Wish from an adult organization. I decided that my whole family would go to the Keys. It was one of the best vacations. We stayed at the northern most key; Key Largo. We spent a week in the keys and had many wonderful adventures.

- Rode on a glass bottom boat

- Went parasailing

- Saw amazing sunsets

- Went snorkling, I saw one fish that was turqoise with purple outlined scales, its tail was red and yellow...beautiful

- We went on an airboat tour of the everglades to see the alligators, I even held a baby alligator; cute right

- We swam with Dolphins...AMAZING. Apparently the woman said the Dolphins new I was sick because they have sonar and could see the tumors

- We drove all the way down to Key West; the water had about 6 different colors in it, so clear and beautiful

There was an artist in Key West who was making spray paint pictures. I asked him what he would draw for a cancer patient; he told me a cigarette. We laughed and then he said "something to cheer them up". He proceeded to smoke a cigarette and chug a beer and get to work on my painting. It was beautiful. My Make A Wish was perfect. Our family really needed the time together in a place away from the world of cancer. Though when you go on vacation you always have to come back. Back to the life you were trying to escape in the first place; and no matter what state you left that place in there is no telling what you will come home to.

Holidays...did you mean Hospital?

2009-12-07T16:49:00.001-08:00

Hello out there!!

Well it was time for the holidays. This would be a really exciting holiday for me because Thanksgiving would be the first time I would meet Dan's extended family (and get to eat two Thanksgiving dinners on the same day). We would go to Dan's house in the afternoon and then to my house in the evening. Thanksgiving also happened to be the day my hair was really falling out; from starting the rest of my chemo cycles. Dan shaved it again for me on Thanksgiving morning.

A couple weeks later my friend Shirley came back for scans. She had said that when she lost her hair she used duct tape to get the little nubs out. When you shave your head it is always a little prickly for a while; apparently duct tape just pulls them right out like waxing. AMAZING. My head was sooo soft. I really enjoyed being bald at this point (though it did get a little cold in the winter).

So it was Christmas time; really irrelevant in the world of cancer. I got really sick on Christmas and continued to have a cold for about 5 days. NIH decided to do a culture and discovered that I had a disease called RSV. This is typically something only babies get. The treatment for RSV involved being in this isolation room all day; then at night you get to sleep with an oxygen mask on your face. I had to stay in that room for 10 days. If we do our calculations that means that I was in the hospital on New Years; again a holiday that has no meaning in the cancer world. Luckily I have doctors who live in my world. I was able to get out of the hospital on New Years Eve for a couple hours. I felt like Cinderella; I had to be back at NIH by 1:00 am. This is one great thing about NIH, they really work around my schedule as much as possible and allow me to have a life. Once I finished my RSV treatment I was released from the hospital. However, when I got home I continually ran a fever. NIH kept doing cultures and nothing would grow. We were stumped and worried. Finally I got a bad headache one night and the doctors decided to do a sinus CT. The CT showed that I had a sinus infection. So once all my sicknesses were cured I felt great.

Dan's favorite Disney movie is Beauty and the Beast. I took him to Wolf Trap to see the broadway production of the movie. It was a great surprise on my part...I am really good at surprises. I wanted to make sure that the time Dan and me spent together was special; not that it wasn't anyways. It has been hard with Dan being at school and me being here getting treatment. We see each other as much as possible but sometimes it is not enough. Dan is my rock and when I am going through chemo and all this sickness I really rely on him to keep me strong.

It was the 25th of January, 2005. Day 0 of my new life, body, and blood. Transplant Day. My whole family and Dan came to the hospital to hang out with me for the day. I really have the ultimate support system!! The nurses always laugh at how large my entourage is. After Day 0 I had 2 DNA's. My skin and hair was mine while by blood was my sisters. So if I committed murder and only left blood on the scene; they could think that my sister did it. Silly, but I thought that was really interesting.

My mom stayed with me the entire time I was in the hospital getting the transplant. She is really the most amazing woman in my life. I haven't mentioned my parents very much in this blog but I will take the opportunity now. My parents have never let me come to the hospital by myself; even for something as simple as a blood draw. They are the most amazing support I could ask for. I know this has been a tough road for them, and they show it every once in a while; but we are each other's strength.

It was Day 12. 2 Days away from leaving the hospital. I had told NIH I would be out of the hospital in 2 weeks; this is the least amount of time a transplant patient has to be in the hospital.

I met a boy while I was in the hospital; his name was Michael. Michael was a couple rooms down from me. He would be getting his transplant in a couple days. Michael was an amazing guy who was trying to cope with having a recurrence. He had a beat box so I thought I would put some lyrics together and ask him to put a beat behind it. The rap would be about getting a transplant; hopefully this would help lift his spirits.

The Transplant Rap

I've got bags on my pole,

I don't know what they're for.

I want to break free,

But I'm behind a door.

They say 3 weeks,

And I'll get to leave here,

I'm gonna do it in 2

And without any fear.

I'll show 'em whats up,

Tell them I'm no joke.

I'll be done with cancer,

I just got my last poke.

I'll start a new life,

Take the lessons I've learned.

Because my cancer is gone.

And the world has turned.

I'm not looking back,

The transplant is done.

Cause with my family and friends,

I'm gonna have some fun.

I have always written poems. I won my 5th grade DARE writing contest and got to read my poem over the radio.

So it was now Day 18 of my new life. Feeling great, tumor free. I still went to the hospital 3 times a week; but just for blood draws. I prayed everyday that this would be the end of my cancer. All I want to be able to do is return to school in the Fall to be with my roomies and Dan. I was on an emotional high; thoughts of a cancer free life were creeping in. I wrote in my journal..."it would really tear me up to hear bad news any time soon. We will just have to sit and wait."

one of my favorite sayings....

2009-12-03T13:48:00.000-08:00

Hello Radiation...Goodbye Tumors

2009-12-02T17:25:00.000-08:00

Hello out there!

Well lots of things happened within the next few months. First, typical cancer and NIH style, I was in the hospital as soon as I got home from NIH with a fever from chemo. Though I was only in the hospital for 3 days....it is just case and point for the life I would be leading for the next 4 years.

School is now in session and I am not there. I know this is what is best as far as being able to dedicate myself completely to beating this disease. It is still hard to watch everyone else being able to go and live their lives and pursue their dreams. My life is on hold, forced to live a life of needles and rat poison. Granted it is not all bad; I have met some amazing people....and I get to spend a lot of time with my family. Also, while everyone else gets to worry about exams and papers I get to just hang out...typically a persons dream; to be able to get by and do nothing. I decided that I would go a little stir crazy if I did nothing all the time so I started to work full time at the doctors office I worked at before. This is another way to distract me from focusing on the situation that was consuming me.

I continued my treatment with 6 weeks of radiation. I was not scared or anything in the beginning, it was more a curiousity. Shirley went through radiation before I did and she had to wear a head basket it seemed like. Her cancer was in her mouth so they had to make sure her head didn't move. It was a very interesting piece of equipment. She didn't have many side effects so I was able to see a little of what I would be experiencing. I never got really tired, until the last week or so. Just like with chemo, I would go play volleyball Tuesday nights with a pick up league. This was my way of continuing to play. Radiation went great, I had a spot on my chest and back where the radiation went in but really those are just battle wounds. I really don't care what my body looks like at the end of this...scars are cool and they show that you are bad mama.
My hair is starting to come back because I have not had chemo for about 8 weeks. It is the most perfect fuzz. Soft as a puppy's fur.

At the end of radiation I got scanned...the results could not be better. The largest tumor in my lungs went from 5cm to 2cm and the tumor in my glute was gone. AMAZING. Could this be the start of a break? The next step is a stem cell transplant in January. My sister will be the donor...amazing that my mom had 2 kids and we are a complete match!!!! That is god working! About a month after the initial post radiation scans I got a pet scan.....my tumors were dead; nothing lit up!!! I just couldn't believe it. I knew better than to get to excited but it is really hard sometimes to not think about the excitement of the end. Especially when I have Shirley around. As usual though, with the good comes the bad; I had pnemonia.

I went up to Frostburg to see the volleyball girls. When I walked in I noticed that they all had the number 6 on their left sleeve. They had dedicated the season to me. I was so surprised. It is amazing to have the support that they give me. The game went great; though it was unbelievably hard to watch and not play. I stayed up for the weekend...because I don't have any responsibilities at home. Somewhat of a gypsie I was.

Dan and I were perfect He came down to Gaithersburg and we went to a drive in theatre (another thing to put in the scrapbook).

Meanwhile, while all this excitement is going on, I still had school to figure out. I received a medical leave of abscence and I still had one more class to finish; and don't you know I have about 0 motivation to finish.

I did however, in the end of October, get to speak in my friend Stacy B's class about my story. This is when I first realized what I wanted to do. I realized I would love to be able to share my story; why else would I be going through this?

It was now the end of November. I started the rest of my chemo cycles. This chemo gets followed up with a few doses of prednisone. I notice that by the 3rd day of taking the pill I am ready to break at the drop of a hat. The feeling would really come on like clock work, I would get sad over a particular situation that was really not a big deal and mom would ask me how long I had been on prednisone.

I also met a new girl Amy. She is almost 18 and such a bright light. I think we will be good friends. Shirley is done with her treatment. We had a "no more chemo" party for her. It is a great thing to be surrounded by a success story. I will make my own success story as time goes on.

The Beginning

2009-11-30T13:43:00.000-08:00

A Week of Firsts

2009-11-30T12:21:00.000-08:00

Hello out there!

When I was first diagnosed I heard about this camp for kids with cancer called Camp Fantastic. I have always loved kids; this is why I want to be a teacher. I applied to be a counselor with no hesitation. Little did I know, I was making one of the best choices of my life.

It was the second week in August; in the mix of end of summer blues and the knowledge that I can't return to school. I headed down to Virginia with Erik and Shirley; to the 4H center in Front Royal. There was an amazing sense of calmness when we first pulled up onto the mountain. I would be working with 12 year olds. There were 3 counselors and 3 campers in my room. When I first arrived at camp I was a little nervous because I did not know the ropes. I was bald and surrounded by people who did not know me. Though I am an open person I still get nerves every once in a while. As the kids arrived on Sunday the nerves were really getting to me. How was I going to make sure 3 kids would have the time of their lives when I didn't even know how I was going to do during the week. As I saw all the kids get off the buses I knew I was home.

Camp is actually very structured. Which is a good thing because as cancer patients we do not have a lot we can control. We do however, have control at camp.

The Daily Schedule:

- Breakfast

- Flag Raising

- Class 1

- Class 2

- Lunch

- Rest Time

- Class 3

- Free Time

- Dinner

- Flag Lowering

- Evening Activities

- Camp Fire

- Bed Time

The classes I would be helping with this year are the Glamour Institute and So You Think You Can Dance. I think I was given these classes because I need to stay inside. Which actually turned out for the better because I was always in air conditioning. Not that I don't like summer but mid August tends to get pretty steamy. The campers get to choose which classes they will attend throughout the week. With a schedule like this one it is amazing how fast the week goes by.

Throughout the week we do many different nightly events. We all get dressed up to support the theme of the night. The kids (and counselors) really enjoy it. During camp I had numerous experiences that I would have probably never had:

I rode a fire truck

I saw the inside of a medical helicopter

I rode a horse

I rode a go-cart

I flew a remote controlled plane

I went up in a cherry picker

I danced on stage during a talent show

I held my campers hand while they got a shot to prevent the shingles

I experienced an avocado face mask

I made my own lip gloss and soap

I painted a boys nails

I learned a TON of new songs

Camp is an experience I can't really put into words. It is a place where it is ok to be different, ok to be bald, ok to not have all 4 limbs. Everyone is accepted, and everyone has fun. I was there as a counselor to give strength to the campers, but really I was the one who was getting strength from them. To see 100 kids going through what I was going through and being as resilient as they are it gave me hope. I fell in love with an entire community; counselors, campers, staff. They would fill me up with hope, strength, and love to fight another year. Saturday came and a feeling of sadness came over me. I now had to leave this eutopia and enter back into my reality. A place where people complain when they have bad hair days, or when they had to wait in line for a long time, and everyone is in a rush to get wherever they are going. Cancer has forced me to slow down and smell the roses. I live each day and do everything I can. It is important to not sweat the small stuff, if you don't sweat the small stuff then there is really no point on dwelling on the big stuff. Now that I was back from camp it was time to start the big stuff in my treatment; radiation and a stem cell transplant.

The Combination of Chemo and Life

2009-11-29T18:10:00.000-08:00

Hello out there!

Well I had completed 2 cycles of chemotherapy at this point. The cycles went fine typically...a little sick feeling and always a fever after, but I still felt great. While I was in the hospital with my fever my friend Pat was down in Florida seeing a Something Corporate concert. He somehow was able to hang out with the band and I got to talk to the Andrew Mahon on the phone!! It was amazing, Something Corporate is one of my favorite bands. The nurse came in to take my blood pressure after I was off the phone with him and it was extremely high. It is funny when you get to the point in treatment when you measure excitement of an activity by how high your blood pressure is.

Being bald, I decided to see how it would be to wear a wig. I was given a short blonde wig (actually pretty cute), but wigs are extremely hot and itchy. I also had about 4 other long wigs that were given to me. We would try them on and take funny pictures. However, I preferred a bandana. I used my bandanas as another accessory to my outfits. I really loved being bald, so easy in the morning.

I went to HFS concert and was able to take a cooler. A boy on the metro asked me why I got to bring a cooler to the concert. I told him it was because I had cancer, he proceeded to say that he should just shave his head and pretend he had cancer so he could bring a cooler. I told him I would be more then willing to switch places with him. People sometimes just have no idea.

Dan and I were still doing great. He was such a great support through my chemo and treatment. We would talk on the phone every night. I decided to make him a scrapbook of our first year together. We all know how the beginning of a relationship can be. It was the best of times in the middle of the absolute worst of times. Hence the name of my blog...Heaven's Hell. It was the best therapy possible. I was able to get lost in the scrapbook and escape from reality a little bit. Dan and me did everything we could together. We went to Point Look Out by his house, an Orioles game, and Great Falls. Did you know that if you have cancer you get a Golden Pass that gets you into any National Park for free!! One of the many perks. We went to a Key's game. Dan had also planned this surprise, we went up in a little plane. I have always wanted to go up in a small plane and just be free in the sky. The pilot even let me fly the plane (we did this move called the Hump-Di-Dump). It was amazing. My parents were concerned that I was running myself into the ground. I looked at it as staying normal. I was holding on to what bit of a normal life I had left. I push on so I can stay strong and hopeful; if I don't do the things in life that I want to do then the cancer has won. I never wanted to let that happen.

At NIH there is a program called Look Good, Feel Better. Dan and me went to it to see what the deal was. They provide make-up and give you a hat. It is a way to make us feel comfortable in our new look. I met an amazing friend at this event. Her name was Shirley Western; she would become one of my best friends. She was 4 cycles ahead of me in treatment. It is really nice to talk to people who are in the same situation. You can tell people on the outside all you want; but they will never fully understand. To be able to have someone who can tell you what you are in store for, or to be able to relate on such a high level was an amazing strength in my battle. Shirley is one of my rocks!

The first set of scans since treatment could not have been better. The largest tumor in my lungs shrunk nearly a centimeter; and the one in my glute muscle shrunk as well (about 25% overall). Everyone was so excited.

As if I did not have enough on my plate already, I got more bad news. Mom, Dad, and Me went on a vacation to the beach. It was a much needed break. However, when I was there I got news that my Grandfather had prostate cancer. I was heart broken. All I could think about was that he was 80 something and he would be going through what I am going through. It was no more then 3 weeks before this that my great uncle Norman died from prostate cancer. Not really anything positive to hold on to when I heard this news.

The year was turning into a blur, between cycles of chemo, vacations at the beach, living a normal life, summer was slipping away sooner then I could imagine. It was July 31st, I had already gone through 5 cycles of chemotherapy. It was time to be scanned; we were all hopeful based off the last scans. It turned out to be mixed results. The tumors in my lungs grew a little while the tumor in my glute shrunk even more (60% from when I was first diagnosed). I will get a few more cycles of chemo and then proceed with radiation. It is hard to always be strong; but I know this is my role. I have to be positive and stay strong for the people around me. Whenever we have bad news it is the same deal. Mom tells them and then they talk to me. I wasn't sure I could do it forever, but it is important that they know I am ok. In the end, as long as I feel great it doesn't matter what I have gone through. The initial rush of people had died down by now. Some because they can't handle it, others because they don't know what to say. I could not have been more greatful for the people who did stick it out with us. I always got so much strength from visitors and the little escape.

It was now the end of August. People starting to move back to school. All my girlfriends were getting a quad together; I will not be there. This was a hard time for me. I would miss so many memories with them while I was stuck in my reality. Though I would visit Frostburg frequently, it would not be quite the same. The end of August also means it is time for the most AMAZING week of the year. I was told about a camp for kids with cancer called Camp Fantastic. I had no idea what that camp would do for me. My life would never be the same; not that it had not already changed as much as possible.

The life with cancer begins

2009-11-24T13:33:00.000-08:00

Hello out there,

We had to leave Frostburg to go to a different place; somewhere where they would be able to help. I went back to the dorm to pack a bag; though I had no idea what to pack or how long I would be gone. I called a couple of friends to see before I left. Jodi was of course there every step of the way. Jessie came by the room to make sure everything would be ok. I went to my friend Matt's dorm to tell him the news. He didn't believe me, I explained to him that I may have cancer and that I had to leave school, he still would not believe it. I left school that day in the back seat of my parent's car. Through the side view mirror I could see the reflection of my Dad's crying face. I had never seen him cry before this day. We didn't know what we were in store for, could not imagine what was to come. All we could do was have faith.

It was April 19th, my first day at NIH (National Institutes of Health), the day when I would get the worst news EVER. I went into "the room". It was this little room in the 13th floor clinic that was to the side of the waiting area. We had never been there before and we already knew that this was a room that you never wanted to go into. It was me, my mom, my dad, and Lindsay...and 4 doctors. They told me I had Ewing's Sarcoma; which is typically a bone cancer except in my condition. Things I was told when in that room: 1. I would never have kids 2. I would lose my hair 3. I would be fighting a hard battle 4. I could not return to school the following year 5. there is not a good success rate with this type of cancer 6. Don't read anything, and probably a lot of other stuff. I was in a 3 week daze. I was taken into a larger room for my initial blood draw. This would be my second time ever having blood drawn and I think they may have left me with only a pint in my body.

After that day there were a series of tests. That weekend there was a Maroon 5 concert at Frostburg that I REALLY wanted to go to...this was before they got big. Of course NIH would not let me come back to school and I had to give my ticket to my friend. People came from everywhere, some that we hadn't talked to in years! It was overwhelming. Everyone's support was amazing, their generosity, their kind words, their prayers. This was one of the hardest parts about being diagnosed, having to tell everyone...over and over. My mom would get them first, she would handle the initial shock and give them the details (she is a detail person). Then they would talk to me and everything would be better. I have always been good at looking at the brighter side of situations, who knew it would be such a needed characteristic.

Since they had told me I was going to lose my hair I decided to go ahead and get it all cut off, I donated it to Locks of Love. Did you know it takes about 12 pony tails to make one wig...go figure. I dyed my hair hot pink!! I loved it. I went back up to school to pick up the rest of my things. It was really hard to see my roomy...though she is the best ever. Jodi had gone around to my friends and put together a little scrapbook of thoughts. I still have it today. I went to see my friends Tyson and Timmy (they were the ones who took me to the hospital). My mom and Mrs Hanson came back up to school with me to pack up my things. We went to Dan's Rock (no relation to the Dan we all know) to have a relaxing moment in the craziness that life was.

I was to start treatment that following week. It would be a whirl wind of emotions. I got treatment in a room with many other people in my same situation. I met many people who had sarcomas; all around my age. There were 6 of us. We would talk and share stories about our lives, what we could come to expect with out treatment, other people we knew. After treatment was complete I got neutropenic. This is when my blood count was down and I needed to stay in the hospital because I had a fever. My coach from when I was 16 came to visit me in the hospital. She was always someone who inspired me and taught me a lot of what I know. Something else amazing happened in the hospital the first time I was neutropenic. I got a phone call from Dan. He had explained to me that one of the volleyball girls had told him the news. He said that he was here for me, and that he would never leave. We caught up for hours again, just like there was never a time apart. I always have said that cancer brought Dan and me back together and I would do it all over just to have the same result.

Once I was out of the hospital I went back up to Frostburg. I went to see the volleyball girls and the baseball boys. Dan of course being my main draw. However, on this weekend, my hair began to fall out. It was slowly getting out of control. I wore a bandana to keep my hair in control, instead of being everywhere. I decided to ask Dan if he would shave my head (he was already a pro because he shaves his own head). We pulled a chair into the kitchen and had a black trash bag on the floor. and we proceeded to shave my hair off. Mind you this was in the middle of a party (we went on the other side of the duplex). Friends came in to watch, we were all laughing at the situation. When it was done I cried. Cried from exhaustion, cried from fear, cried because I missed my old life already. But I had my family, I had Dan, and I had the most amazing support system imaginable.

Fresh Start

2009-11-23T12:58:00.001-08:00

Hello out there,

Well I don't really know where to start but I thought that a blog would be a great way to reach out to people and share my story (assuming people read it). My name is Lauren and I am a 24 year old cancer survivor. I feel like I should give some background before this blog can really be everything it could be. I think I will take you through my life little by little until we reach the present day. Then everything will be what is going on now. I have always loved making connections with people, and now I feel like I actually have a reason to. I hope someone gets something out of hearing my story.

Well I guess a good place to start would be with my family background. I have the best family ever! I have parents who are still in love after 30 or so years. I have grandparents who send love letters to each other when they are apart. Both my mom and dad are from families of 5, so I have a lot of relatives. I wouldn't have it any other way. Family is the most important thing in my life. I have an amazing sister who I could not love more.

I have always been the athletic type. I played softball as a kid, and fell in love with volleyball when I was 12. I played for the varsity team at my high school and went on to play ball in college. Now that I can not play anymore (we will get to this later) I coach.

I guess this is a good place to start my story. I loved college. I was on the volleyball team which was an instant set of friends. I decided to major in Physical Education and Health to be a teacher, I didn't know which grade yet. I had a boyfriend from high school when I first started college; however we ended up growing apart. It was probably the first week of classes when I met this boy at a party. The volleyball girls wen to the baseball house...trouble already. I met this boy Dan. We hit it off from the start. I did not want to rush into things so I went home and gossiped about him with my roommate...typical. Jodi would just listen and give her insight on the situation. I met Dan again in the parking lot one day at the cafeteria. We were both very excited to see each other. At the end of our conversation I told him to call me sometime and gave him my number. He called that night and we talked for hours. For the next 2 months things were perfect. Volleyball was great, I was playing right front and some back row if I got lucky. Dan and I were extremely happy with each other. Then reality struck.

I started to think to myself that I was just a freshman. I was not ready for forever with Dan (I knew that is what it would be), so I broke up with him. I needed to be on my own for a little to make sure Dan was really what I wanted. I asked Dan to wait, that I wanted to be with him but just not yet. He said ok...amazing right!!!

The holidays came and went. I met some other guys but they were nothing. I knew where my heart was. It was time to come back to school. It was hard to see Dan at the cafeteria and ignore each other. I had my friends and he had his. I was living the life somewhat. Weekends would bring great fun, and the weeks flew by. I found some of my best friends during this semester (you know who you are). Then it was time for spring break. I decided to go snowboarding for the weekend with a few friends. It was an amazing weekend. I really loved snowboarding and I had never been able to do it because of volleyball. However, at the end of the trip my right butt muscle was extremely swollen. My friends and I joked about how I had a half J-Lo butt...pretty nice going from nothing to half a butt. I did not think anything of it, I talked to a few doctors and they just thought it was a deep bruise. So I iced it and it eventually went down and the pain went away.

It was a few weeks later. I was eating pizza in my friend's dorm and reality struck again. I had been coughing up blood all day...don't freak out, it really wasn't that much. I just knew that it wasnt' right. I called my mom to tell her; which was strange because I am usually the kind of girl who would say "it will go away tomorrow". Mom of course was paniced. She asked if I had smoked anything....of course NOT TRUE. She told me to go to the ER right away. Disgruntled and scared, I did. My friends waited there with me...which was about 3 hours by the way. I eventually got a chest X-Ray and that is really when my world turned upside down. There was no more naive Lauren, no more "nothing will happen to me", no more being 18. The doctor thought I may have cancer. My friends came into the room to console me, but they were boys and were completely thrown off guard when I was crying. I called my parents and they came to the hospital (1 hr and 45 mins to get to Frostburg....normally 2 hours). I stayed in the hospital overnight. In the morning they did a full body CT and that is when we found the tumor in my right butt muscle. I also had over 15 tumors in my lungs.

My world was spinning. Life was a blur. What was in store? What was going on? Why Me? Why?