For Love of Music

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!!!!

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?

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

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

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

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.