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
Sunday, February 28, 2010
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.
.
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".
MAYO....here we go
Hello out there!!
In order to make it to Minnesota we were going to need some help. My family would have to pay for airfare and hotel, along with whatever payments we needed to make to insurance. Entirely too much for a family of four, and a college tuition. So, without even having to ask, Dan's mom set up a donation for our cause. It was amazing, to put some word to it, how many people came to help when we needed them. I could never have imagined! I think the total raised by Nancy was about $7,000 dollars. What a relief. I feel horribly for those patients who end up not being able to get treatment because they can't afford it. What do they do?
We left for MN December 9th; the drive would take a day and a half. The drive was uneventful considering we only take like 3 main highways to get there. While driving through Wisconsin, the landscape was beautiful!! It was flat then all of a sudden a big rock would be shooting up from the ground...not a mountain, just a really tall rock, kinda like the grand canyon all by itself in the middle of a field. I would learn later this was the Wisconsin Dells. Me and mom wanted to take a picture but dad wouldnt turn around. You know me with pictures!!
Once we arrived in Rochester we checked in to the Extended Stay and were starving. The hotel recommended a place that could have been within walking distance if it wasn't below zero out. Little did we know that this place they recommended was the BEST bar I have ever been too!!!! The place is called Whistle Binkies!! Amazing. The atmosphere is a sportsbar cabin. They have free popcorn and a bar staff that is like your best friend. This bar lived up to the standard of "people in Minnesota are the nicest ever".
Mom and Dad came out with me for this initial visit. Luckily my Dad was retired by now so he stayed with me the entire month. Mom had to leave the next week and Dan would be out in a couple weeks. So it was time to enter the building that is MAYO. I was shocked and felt out of place. This building was absolutely beautiful...for what a building can be. Marble everything and lots of beautiful artwork, I felt like I should have dressed up for the occasion. NIH is so relaxed, doctors just wear white coats; at MAYO the doctors are in suits and ties. Once I came back to reality I was forced to stand in the long line that was admissions. For this trip to Minnesota we would have to use insurance for the first time in my cancer treatment. THANK GOODNESS. I can not imagine having to use insurance all the time, too many hoops. Luckily, my sister chose the insurance field and medical billing as her profession, and she could not be more helpful in this situation.
On a side note....Rochester, MN has a Super Target!!!! It was perfect and right across the street practically from our hotel. In that same shopping center there was a Mega-Digital Screen; whatever that means. Oh, and it was heaven having my primetime shows be on an hour earlier....I tend to fall asleep pretty early.
We decided that to pass the time between appointments we would go to The Mall of America (there were some days where all I had to do was get a blood draw). So we set out on our adventure! I have been there once before but my parents had not. Of course it is nothing but a mall that it is realllllyyyy biiiiggg. You don't really want to go there when you have no money because it just keeps throwing it in your face. We saw lego world, which I guess is pretty cool. Of course there is a rollercoaster that costs you $20 per ride, and a movie theatre that we did not check the prices for, and a lot of stores. Whoever designed this mall and selected the stores was pretty smart, most stores are on every floor. So for people like us who might only look at one floor, we are sure not to miss there store. And again be reminded about the fact that we are struggling college students with no money!! Fun.
In order to make it to Minnesota we were going to need some help. My family would have to pay for airfare and hotel, along with whatever payments we needed to make to insurance. Entirely too much for a family of four, and a college tuition. So, without even having to ask, Dan's mom set up a donation for our cause. It was amazing, to put some word to it, how many people came to help when we needed them. I could never have imagined! I think the total raised by Nancy was about $7,000 dollars. What a relief. I feel horribly for those patients who end up not being able to get treatment because they can't afford it. What do they do?
We left for MN December 9th; the drive would take a day and a half. The drive was uneventful considering we only take like 3 main highways to get there. While driving through Wisconsin, the landscape was beautiful!! It was flat then all of a sudden a big rock would be shooting up from the ground...not a mountain, just a really tall rock, kinda like the grand canyon all by itself in the middle of a field. I would learn later this was the Wisconsin Dells. Me and mom wanted to take a picture but dad wouldnt turn around. You know me with pictures!!
Once we arrived in Rochester we checked in to the Extended Stay and were starving. The hotel recommended a place that could have been within walking distance if it wasn't below zero out. Little did we know that this place they recommended was the BEST bar I have ever been too!!!! The place is called Whistle Binkies!! Amazing. The atmosphere is a sportsbar cabin. They have free popcorn and a bar staff that is like your best friend. This bar lived up to the standard of "people in Minnesota are the nicest ever".
Mom and Dad came out with me for this initial visit. Luckily my Dad was retired by now so he stayed with me the entire month. Mom had to leave the next week and Dan would be out in a couple weeks. So it was time to enter the building that is MAYO. I was shocked and felt out of place. This building was absolutely beautiful...for what a building can be. Marble everything and lots of beautiful artwork, I felt like I should have dressed up for the occasion. NIH is so relaxed, doctors just wear white coats; at MAYO the doctors are in suits and ties. Once I came back to reality I was forced to stand in the long line that was admissions. For this trip to Minnesota we would have to use insurance for the first time in my cancer treatment. THANK GOODNESS. I can not imagine having to use insurance all the time, too many hoops. Luckily, my sister chose the insurance field and medical billing as her profession, and she could not be more helpful in this situation.
On a side note....Rochester, MN has a Super Target!!!! It was perfect and right across the street practically from our hotel. In that same shopping center there was a Mega-Digital Screen; whatever that means. Oh, and it was heaven having my primetime shows be on an hour earlier....I tend to fall asleep pretty early.
We decided that to pass the time between appointments we would go to The Mall of America (there were some days where all I had to do was get a blood draw). So we set out on our adventure! I have been there once before but my parents had not. Of course it is nothing but a mall that it is realllllyyyy biiiiggg. You don't really want to go there when you have no money because it just keeps throwing it in your face. We saw lego world, which I guess is pretty cool. Of course there is a rollercoaster that costs you $20 per ride, and a movie theatre that we did not check the prices for, and a lot of stores. Whoever designed this mall and selected the stores was pretty smart, most stores are on every floor. So for people like us who might only look at one floor, we are sure not to miss there store. And again be reminded about the fact that we are struggling college students with no money!! Fun.
Tuesday, February 23, 2010
Running out of Options
Hello out there!!
October was here. Whether I liked it or not, it was time to be scanned. My tumors had grown to about 2.4 centimeters. I was terrified. See the benefit of living this long is that you are still living; but as you continue to try all sorts of treatments the list of options to kill the bastard tumors shortens. Surgery is not an option right now because there are too many tumors. I have 3 in my lungs. The doctors do not want to do surgery until they know that it is the last option. So the decided treatment was the antibody. I mentioned this in a previous post; we had been waiting on the trial to open at NIH but since it had not opened yet there was really no telling when it would open. The solution, get the antibody at the MAYO Clinic in Minnesota. Compared to NIH, MAYO might as well be across the country. When I first heard about having to go to MAYO for treatment I was extremely scared and upset. I was full of questions.
Would I be able to go back to school?
Will I ever finish school?
Will we be able to get it approved by insurance?
What if this treatment doesn't work?
Is this my last option?
What will the doctors be like?
...and more as I got deeper in my thoughts
I wrote a poem, because I write for therapy, about leaving for Minnesota but I can't find where I saved it. I will post it when I find it.
It is around this time where I am really thinking all the wrong things. A friend at the hospital, Maria, passed away. She was the sweetest little girl!! Also, another one of my friends was not doing well at all. I started to think that I was just waiting for it to be my turn. You can only see so much death before you start to get inside your own head too much. It was a great help to talk to my roommates about the Minnesota thing. We all know how talking about things makes them smaller. I didn't want to tell people that I could not stop thinking about my death because what would they say to that; they would be freaked out. There is a fine line between too much information and keeping my friends in the loop.
So once we did some digging, I got all my questions answered. I would be able to continue school and would remain on track to graduate in December 2008. The first and fourth month of treatment would have to be spent at MAYO but the other visits would only be for a couple days at a time. I could not be more thankful for my teachers; they allowed me to continue with school as scheduled even though I had to miss so much.
My friend Shirley had her baby!!!! A beautiful baby girl named Olivia. This was much needed good news and gives me hope. I will be excited to see the baby!
I report to Minnesota in December for the first visit; excited and nervous to embark on this new place and treatment.
October was here. Whether I liked it or not, it was time to be scanned. My tumors had grown to about 2.4 centimeters. I was terrified. See the benefit of living this long is that you are still living; but as you continue to try all sorts of treatments the list of options to kill the bastard tumors shortens. Surgery is not an option right now because there are too many tumors. I have 3 in my lungs. The doctors do not want to do surgery until they know that it is the last option. So the decided treatment was the antibody. I mentioned this in a previous post; we had been waiting on the trial to open at NIH but since it had not opened yet there was really no telling when it would open. The solution, get the antibody at the MAYO Clinic in Minnesota. Compared to NIH, MAYO might as well be across the country. When I first heard about having to go to MAYO for treatment I was extremely scared and upset. I was full of questions.
Would I be able to go back to school?
Will I ever finish school?
Will we be able to get it approved by insurance?
What if this treatment doesn't work?
Is this my last option?
What will the doctors be like?
...and more as I got deeper in my thoughts
I wrote a poem, because I write for therapy, about leaving for Minnesota but I can't find where I saved it. I will post it when I find it.
It is around this time where I am really thinking all the wrong things. A friend at the hospital, Maria, passed away. She was the sweetest little girl!! Also, another one of my friends was not doing well at all. I started to think that I was just waiting for it to be my turn. You can only see so much death before you start to get inside your own head too much. It was a great help to talk to my roommates about the Minnesota thing. We all know how talking about things makes them smaller. I didn't want to tell people that I could not stop thinking about my death because what would they say to that; they would be freaked out. There is a fine line between too much information and keeping my friends in the loop.
So once we did some digging, I got all my questions answered. I would be able to continue school and would remain on track to graduate in December 2008. The first and fourth month of treatment would have to be spent at MAYO but the other visits would only be for a couple days at a time. I could not be more thankful for my teachers; they allowed me to continue with school as scheduled even though I had to miss so much.
My friend Shirley had her baby!!!! A beautiful baby girl named Olivia. This was much needed good news and gives me hope. I will be excited to see the baby!
I report to Minnesota in December for the first visit; excited and nervous to embark on this new place and treatment.
Wednesday, February 17, 2010
A Birthday to Remember
Hello out there!!
My birthday was coming up and things were going great.
When I had my stem cell transplant, one of the side effects was graft vs. host disease (GVH). This GVH caused me to lose the ability to produce tears. This really makes crying a site to see. Everything else is the same....I get flushed, stuffy, and full of emotion...and then nothing. No tears, no release, nothing. There the emotion stays, stuck inside, ready to be unleashed at any moment. To help with this no tear thing I found a place in Boston called the Boston Eye Institute. The specialize in GVH of the eyes. I went there and got these special contacts. They hold liquid between the contact and my eye. It is amazing!! Though I still have to use eye drops a million times a day...it is better than it was.
While we were in Boston we decided to go whale watching. This was the most serene, calming, experience. To watch whales just out in nature...doing what they do. Very cool! We saw about 5 whales that day. It is so calm on the water and all you hear are their blow holes. I will never forget this.
At this point in my life, most of my friends are graduating from college. However, I get the pleasure of staying in school for another 4 years. Missing years and semesters does not help my goal of graduating from college. Luckily, in my program most people take longer then 4 years anyways!!
Ah, and then it was here, my 22rd birthday, I know not really a special one but I got to spend it with Dan. We went to Busch Gardens; I had never been. We rode every roller coaster twice and had an amazing time. When I am with Dan the world of cancer disappears. If only there was a way to keep him around all the time. This is a battle that I will not talk about in the blog....sorry.
A little boring...but I also got all four wisdom teeth pulled. It wasn't too bad. I got to get put to sleep so I like that.
Things in the summer were overall pretty great. I didn't have to go to the hospital much. I was able to work, go to the zoo, a wedding, see friends. Continueing with the "normal" life just fine. Before I knew it it was time for Camp Fantastic, volleyball season, and back to school.
It was roughly 6 months since my last chemo cycle; and of course, time to be scanned again. After an amazing summer, a little of a vaca from NIH, my tumors were growing. I will still be able to return to school, and will be scanned in 2 months to see how fast they are growing. At this point, we didn't really know what the next treatment would be; so all we could do was wait for October.
My birthday was coming up and things were going great.
When I had my stem cell transplant, one of the side effects was graft vs. host disease (GVH). This GVH caused me to lose the ability to produce tears. This really makes crying a site to see. Everything else is the same....I get flushed, stuffy, and full of emotion...and then nothing. No tears, no release, nothing. There the emotion stays, stuck inside, ready to be unleashed at any moment. To help with this no tear thing I found a place in Boston called the Boston Eye Institute. The specialize in GVH of the eyes. I went there and got these special contacts. They hold liquid between the contact and my eye. It is amazing!! Though I still have to use eye drops a million times a day...it is better than it was.
While we were in Boston we decided to go whale watching. This was the most serene, calming, experience. To watch whales just out in nature...doing what they do. Very cool! We saw about 5 whales that day. It is so calm on the water and all you hear are their blow holes. I will never forget this.
At this point in my life, most of my friends are graduating from college. However, I get the pleasure of staying in school for another 4 years. Missing years and semesters does not help my goal of graduating from college. Luckily, in my program most people take longer then 4 years anyways!!
Ah, and then it was here, my 22rd birthday, I know not really a special one but I got to spend it with Dan. We went to Busch Gardens; I had never been. We rode every roller coaster twice and had an amazing time. When I am with Dan the world of cancer disappears. If only there was a way to keep him around all the time. This is a battle that I will not talk about in the blog....sorry.
A little boring...but I also got all four wisdom teeth pulled. It wasn't too bad. I got to get put to sleep so I like that.
Things in the summer were overall pretty great. I didn't have to go to the hospital much. I was able to work, go to the zoo, a wedding, see friends. Continueing with the "normal" life just fine. Before I knew it it was time for Camp Fantastic, volleyball season, and back to school.
It was roughly 6 months since my last chemo cycle; and of course, time to be scanned again. After an amazing summer, a little of a vaca from NIH, my tumors were growing. I will still be able to return to school, and will be scanned in 2 months to see how fast they are growing. At this point, we didn't really know what the next treatment would be; so all we could do was wait for October.
Monday, February 15, 2010
Moving On...I'm Sooo Ready
Hello out there!!!
Well I was one week away from the end of my chemo. I was really ready to move onto the next chapter in my life. I am now 22 and have been with Dan for 3 years now. Not saying that I am ready for marriage but I would like to at some point be able to have a life outside of NIH with my other half. How can I make any plans for my life when I am bound to a disease like cancer. Everything is always up in the air, and at the last second changes. I don't know when the last time I got a break for more then a month. ONE MONTH. Luckily, I have friends that are close and I live 15 minutes from NIH. I don't know how life would be if I was away and had to fly everywhere; though I do want to get out and experience the world. I will be done with the chemo in one week and who knows what will be next.
We found out that my mom has Lyme's Disease. She has really been out of sorts lately and this explains it all. So now on top of me having cancer, she has to fight her own battle with lyme. The doctors put her on all sorts of antibiotics. She feels different every day and it is hard to keep it all balanced. I try to help out around the house as much as possible but I never feel like it is enough. I wish I could just do it all to take the burden off my mom, but with both of us a little funky feeling, our lives have been put on hold. Living each day and time flying by.
A look into the future......
They have made a recent discovery with antibody treatment and Ewing's. This is great. It is the first new treatment since I was diagnosed in 2004. When I heard about the news I was ecstatic. This was the reason I had faught so long, the pot of gold. This is what will allow me to move on. The only problem....a trial had not opened at NIH yet. With my treatment, and the new discoveries, there has to be a trial somewhere that can accept you. Once drugs and treatments are done the trial phase they get approved by the FDA and become mainstream. I don't know how long it will be until this happens but I hope I will get on a trial soon. This new treatment is definately bitter sweet. I have watched so many people lose the fight; I can't help but think "if only they had lived until now". But there is a reason for everything.
Well I was one week away from the end of my chemo. I was really ready to move onto the next chapter in my life. I am now 22 and have been with Dan for 3 years now. Not saying that I am ready for marriage but I would like to at some point be able to have a life outside of NIH with my other half. How can I make any plans for my life when I am bound to a disease like cancer. Everything is always up in the air, and at the last second changes. I don't know when the last time I got a break for more then a month. ONE MONTH. Luckily, I have friends that are close and I live 15 minutes from NIH. I don't know how life would be if I was away and had to fly everywhere; though I do want to get out and experience the world. I will be done with the chemo in one week and who knows what will be next.
We found out that my mom has Lyme's Disease. She has really been out of sorts lately and this explains it all. So now on top of me having cancer, she has to fight her own battle with lyme. The doctors put her on all sorts of antibiotics. She feels different every day and it is hard to keep it all balanced. I try to help out around the house as much as possible but I never feel like it is enough. I wish I could just do it all to take the burden off my mom, but with both of us a little funky feeling, our lives have been put on hold. Living each day and time flying by.
A look into the future......
They have made a recent discovery with antibody treatment and Ewing's. This is great. It is the first new treatment since I was diagnosed in 2004. When I heard about the news I was ecstatic. This was the reason I had faught so long, the pot of gold. This is what will allow me to move on. The only problem....a trial had not opened at NIH yet. With my treatment, and the new discoveries, there has to be a trial somewhere that can accept you. Once drugs and treatments are done the trial phase they get approved by the FDA and become mainstream. I don't know how long it will be until this happens but I hope I will get on a trial soon. This new treatment is definately bitter sweet. I have watched so many people lose the fight; I can't help but think "if only they had lived until now". But there is a reason for everything.
A Little of the "Normal" Life
Hello out there!!
Well it is March of 2007. Things could not have been going better. Chemo was a breeze; thank God. I was on cycle 4 of 6. My scans were showing that the chemo was working!!! It was time for a vacation. Spring Break with my best college friends.
Well it is March of 2007. Things could not have been going better. Chemo was a breeze; thank God. I was on cycle 4 of 6. My scans were showing that the chemo was working!!! It was time for a vacation. Spring Break with my best college friends.
My roommates and our crew went down to Daytona for a week. I was in a much needed break from the hospital. This was one of the best vacation ever. I had never done anything for spring break before so it was exciting. We found this great bar that played reggae music, that was where we hung out most nights. The flower was from Dan. We ran into the baseball boys who were on their spring trip. I was away, free of all hospital thoughts, it was a blast.
My friend Shirley was pregnant!!!! What a miracle. Shirley being pregnant was my hope for one day being able to have kids. This is something that has been in the back of my mind since they first told me. Though I am not ready now, I will someday have kids with Dan. I know that there are many ways to have kids, but really nothing can beat having a baby that is both you and the one you love.
Baseball season is always the hardest. Dan and I don't spend a lot of time together as it is with out schedules, baseball season just keeps us apart even more. This season was particularly hard because I was not at school. I really never like being away from Dan for periods of time. I am not an over-the-phone kind of girl. Luckily with my cycles of chemo, time goes fast.
Tuesday, February 2, 2010
Ahh...Family, Holidays, Winter Break!
Hello out there!
Well as time passes things always get smaller. It was now the beginning of December 2006 and I was feeling relaxed and energized to fight another day. Thanksgiving was great. Dan and I decided to do Thanksgiving separate this year because our dinners were at the same time. I saw him the next day for leftovers at his house. I still have a hard time thinking about not seeing my family on Thanksgiving. I have a break from the hospital until January...this is something that is quite a tease.
Christmas is my favorite season. It is a time to make presents and show people how much they mean to you. I have gotten a greater appreciation since I have had cancer. There is never a time that I don't embrace the opportunity to let people know how important they are to me. This is something to live by; cancer or no cancer.
Me, Dad, and Dan went to Wellsboro shortly after Christmas to visit. This would be Dan's first time meeting my Dad's side of the family. It was a blast. I love showing Dan off and to have him meet my cousins was really great!
Of course...I don't think I will make it through one entry without something changing in my cancer status. But the more I blog the better my chances I guess. It was now mid January and I had been scanned again. The results were....surprise....not good. This is typical now. I had 3 new tumors in my lungs. I was devastated. I never let myself think that the surgery would be the end of it, but 3 months later....really? The largest tumor was 1 cm....not very big but still. It was time to start chemo again. My hair had just gotten that great peach fuss length too. My chemo schedule had also changed to a regimen that will be too much for school. I decided to remove myself from the spring semester at Frostburg. Just another thing. The chemo cycle was 2 weeks on and 1 week off. I think deep down I knew I was ready for a break; just wanted to keep moving forward and not let the cancer win.
I went out to Missouri to visit Shirley and Erik. It was great. We did all sorts of things. I got to see a bald eagle up close. It happened to be their migrating season. There were sooooo many in the sky it was amazing. We went to an exhibit where I held a snake. I will post the picture soon. I was soooo proud of myself. Dan would have flipped (he hates snakes).
I wrote in my journal about how great my friend Kelley was during this time. We were talking 2 times a day some days. I thought I would write it for the world to see. Friends are what keeps me going. Thanks to everyone who sent me packages (jodi), or brought me ice cream and carebear stuffed animals (sarah). I am soooo grateful to have the support system I have.
Chemo, my dog, has learned many tricks now. I decided he should know how to "little bark" and "big bark". He caught on soooo quick. He really brings me so much joy. He is constant love and excitement. Maybe I will learn how to post some video on the blog so everyone can see his tricks.
There is a lot to look forward to. We are almost to the present day. It is now 2007 in the blog and we only have 3 more years to catch up on. We are at the halfway mark. Though the past 3 years have certaintly been the most eventful. I can't wait to tell you about them. Stay tuned!
Well as time passes things always get smaller. It was now the beginning of December 2006 and I was feeling relaxed and energized to fight another day. Thanksgiving was great. Dan and I decided to do Thanksgiving separate this year because our dinners were at the same time. I saw him the next day for leftovers at his house. I still have a hard time thinking about not seeing my family on Thanksgiving. I have a break from the hospital until January...this is something that is quite a tease.
Christmas is my favorite season. It is a time to make presents and show people how much they mean to you. I have gotten a greater appreciation since I have had cancer. There is never a time that I don't embrace the opportunity to let people know how important they are to me. This is something to live by; cancer or no cancer.
Me, Dad, and Dan went to Wellsboro shortly after Christmas to visit. This would be Dan's first time meeting my Dad's side of the family. It was a blast. I love showing Dan off and to have him meet my cousins was really great!
Of course...I don't think I will make it through one entry without something changing in my cancer status. But the more I blog the better my chances I guess. It was now mid January and I had been scanned again. The results were....surprise....not good. This is typical now. I had 3 new tumors in my lungs. I was devastated. I never let myself think that the surgery would be the end of it, but 3 months later....really? The largest tumor was 1 cm....not very big but still. It was time to start chemo again. My hair had just gotten that great peach fuss length too. My chemo schedule had also changed to a regimen that will be too much for school. I decided to remove myself from the spring semester at Frostburg. Just another thing. The chemo cycle was 2 weeks on and 1 week off. I think deep down I knew I was ready for a break; just wanted to keep moving forward and not let the cancer win.
I went out to Missouri to visit Shirley and Erik. It was great. We did all sorts of things. I got to see a bald eagle up close. It happened to be their migrating season. There were sooooo many in the sky it was amazing. We went to an exhibit where I held a snake. I will post the picture soon. I was soooo proud of myself. Dan would have flipped (he hates snakes).
I wrote in my journal about how great my friend Kelley was during this time. We were talking 2 times a day some days. I thought I would write it for the world to see. Friends are what keeps me going. Thanks to everyone who sent me packages (jodi), or brought me ice cream and carebear stuffed animals (sarah). I am soooo grateful to have the support system I have.
Chemo, my dog, has learned many tricks now. I decided he should know how to "little bark" and "big bark". He caught on soooo quick. He really brings me so much joy. He is constant love and excitement. Maybe I will learn how to post some video on the blog so everyone can see his tricks.
There is a lot to look forward to. We are almost to the present day. It is now 2007 in the blog and we only have 3 more years to catch up on. We are at the halfway mark. Though the past 3 years have certaintly been the most eventful. I can't wait to tell you about them. Stay tuned!
Just Keep Swimming....Just Keep Swimming!
Hello out there!
As you can see there is a new layout. I was getting bored with the other one. I don't know; I still feel that it could be a little more exciting. But either way; I hope people are reading.
Well the summer flew by as usual. Nothing too much to report on the treatment cycle. I finished my chemo around the middle of July. Of course hoping that this would be the last treatment. I went a while without writing in my journal during this summer so that makes me think that it was a pretty uneventful summer. Sometimes it is hard to remember what and when stuff happened. I find that I have begun to date my life as BC (before cancer), and now. But I am doing my best.
Dan had gone on a 7 day cruise. I was supposed to go with him but I worked a volleyball camp the week before and the week after the cruise was camp fantastic. This year right after camp fantastic I had to leave for school. I decided that to have a cruise vacation in the middle of that craziness might just be pushing the limits a little. Though it would have been my first cruise and a blast I'm sure; I prioritized. My mom would have been proud; then again she was probably the one who kept me in check with having too much on my plate in the first place.
So it was time for camp. This would be my 3rd year as a counselor at camp. I still get the same feelings about it...like a 5 year old on Christmas eve! This year I am working with 9 year old campers. This is the youngest age that I have worked with. One of my campers eventually earned the nickname M.I.A. Mia because she was always missing. I was co-counselors this year with a wonderful girl named Kelly. Little did I know what a lasting bond we would have. We were both bald and I think there may have only been a couple other campers that were bald at the time. Shirley and her husband Erik also came to camp this year; which is amazing. Camp is not only good for the campers. It is also sometimes a therapy session for counselors. I had an amazing conversation with Kelly and another survivor Hiedi. Heidi and I had worked together for the past 3 years and we were great friends. We talked about what we were going through and how hard it can be. Sometimes it takes one to know one; and other people in my life just can't relate. But once again...the week goes by faster then ever and it is back to the real world...or at least one version of it.
This year at school I am a Junior, taking 18 credits. I will only have 4 more semesters and I will have my undergraduate degree in Health and Physical Education!!!! I was scanned in September and saw that my tumors were active in my lungs. It had been a couple months since I had chemo. The doctors decided it would be best to take them out. So I had my first cancer surgery. They took 3 tumors out of my Right lung. Surgery went great, the only thing I was really nervous about was the epidural. I have never gotten anything like that before and of course I didn't feel a thing. I was recovered from surgery and back to school within a month. Little did I know what I was coming back to. Missing 3 weeks in the middle of the semester is never a good thing. I was swamped with work; and not necessarily in the best mindset to get it done. I found out before returning to school that my friend Sam had passed away. Sam was an inspiration to me and had been fighting longer than I had. This news really hurt. Luckily I still had my rock, Shirley. I try to stay positive but I am really holding on by a thread now. Between my work, having a terminal condition, being sore from my surgery, and it being cold and snowy.....I think this is a little of a low for me.
I have been told that in order to see the rainbow you have to withstand the rain. I am holding them to that statement. Holidays are coming now and I am sure things will get better.
As you can see there is a new layout. I was getting bored with the other one. I don't know; I still feel that it could be a little more exciting. But either way; I hope people are reading.
Well the summer flew by as usual. Nothing too much to report on the treatment cycle. I finished my chemo around the middle of July. Of course hoping that this would be the last treatment. I went a while without writing in my journal during this summer so that makes me think that it was a pretty uneventful summer. Sometimes it is hard to remember what and when stuff happened. I find that I have begun to date my life as BC (before cancer), and now. But I am doing my best.
Dan had gone on a 7 day cruise. I was supposed to go with him but I worked a volleyball camp the week before and the week after the cruise was camp fantastic. This year right after camp fantastic I had to leave for school. I decided that to have a cruise vacation in the middle of that craziness might just be pushing the limits a little. Though it would have been my first cruise and a blast I'm sure; I prioritized. My mom would have been proud; then again she was probably the one who kept me in check with having too much on my plate in the first place.
So it was time for camp. This would be my 3rd year as a counselor at camp. I still get the same feelings about it...like a 5 year old on Christmas eve! This year I am working with 9 year old campers. This is the youngest age that I have worked with. One of my campers eventually earned the nickname M.I.A. Mia because she was always missing. I was co-counselors this year with a wonderful girl named Kelly. Little did I know what a lasting bond we would have. We were both bald and I think there may have only been a couple other campers that were bald at the time. Shirley and her husband Erik also came to camp this year; which is amazing. Camp is not only good for the campers. It is also sometimes a therapy session for counselors. I had an amazing conversation with Kelly and another survivor Hiedi. Heidi and I had worked together for the past 3 years and we were great friends. We talked about what we were going through and how hard it can be. Sometimes it takes one to know one; and other people in my life just can't relate. But once again...the week goes by faster then ever and it is back to the real world...or at least one version of it.
This year at school I am a Junior, taking 18 credits. I will only have 4 more semesters and I will have my undergraduate degree in Health and Physical Education!!!! I was scanned in September and saw that my tumors were active in my lungs. It had been a couple months since I had chemo. The doctors decided it would be best to take them out. So I had my first cancer surgery. They took 3 tumors out of my Right lung. Surgery went great, the only thing I was really nervous about was the epidural. I have never gotten anything like that before and of course I didn't feel a thing. I was recovered from surgery and back to school within a month. Little did I know what I was coming back to. Missing 3 weeks in the middle of the semester is never a good thing. I was swamped with work; and not necessarily in the best mindset to get it done. I found out before returning to school that my friend Sam had passed away. Sam was an inspiration to me and had been fighting longer than I had. This news really hurt. Luckily I still had my rock, Shirley. I try to stay positive but I am really holding on by a thread now. Between my work, having a terminal condition, being sore from my surgery, and it being cold and snowy.....I think this is a little of a low for me.
I have been told that in order to see the rainbow you have to withstand the rain. I am holding them to that statement. Holidays are coming now and I am sure things will get better.
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