The Beginning

A Week of Firsts

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

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

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

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?