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!
Sunday, December 5, 2010
Monday, September 6, 2010
My Grown-Up Life
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!!!!!
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!!!!!
Thursday, July 1, 2010
The Next Chapter
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.
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.
Friday, June 11, 2010
So Much Going On!!!
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.
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.
Wednesday, May 19, 2010
The Sun
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!!!!
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!!!!
Tuesday, May 11, 2010
Real Life....ugh
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.
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.
Monday, May 3, 2010
Amazing Anniversary Weekend!!
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.
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.
Monday, April 26, 2010
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???
Monday, April 19, 2010
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)
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)
Wednesday, April 14, 2010
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?
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?
Monday, April 12, 2010
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.
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.
Friday, April 9, 2010
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.
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!!!
Monday, April 5, 2010
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.
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.
Monday, March 29, 2010
Summer Under the Sun!
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.
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.
Friday, March 19, 2010
Fighting the Good Fight
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.
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.
Saturday, March 6, 2010
The Engaged Life
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 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.
Tuesday, March 2, 2010
I got an Award!!
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 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!!!
Monday, March 1, 2010
This will be one of my favorite posts
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!!
Sunday, February 28, 2010
Shout-Out Sunday!!
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
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
Saturday, February 27, 2010
Time Could Not be Going Faster!
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.
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.
Friday, February 26, 2010
Christmas in Minnesota
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 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.
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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.
Wednesday, February 24, 2010
If I Were...
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.
I look forward to seeing everyone elses "If I Were".
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 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 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 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".
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