updates
hello,
I am sorry that it has been a while since I have written.
I am really swamped with school work and dealing with different things. I started doing yoga on September 12th. it is helping with calming down and also just forgetting about the many things that are happening around me to breathe. it is also really great for stretching, i am really rigid from the GVHD, i think or just the transplant in general.
I had an awful dream lastnight, where i did not even have my transplant yet and I got this weird disease that would last 100 days and I had to take all these things for it. It was so weird. It woke me up at 730 am in a worry. My mom, ironically, called me at about 8am, which she never does to tell me my pediatric dentist was on the early show. I missed it because I was brushing my teeth.
I am going to see my mother for her birthday in North Carolina, and I am also going to be doing a walk in north carolina for the smile-forever organization that has two locations. One in New Jersey and one in North Carolina.
Alison has been taking more pictures than I have lately and she has a flickr account. She was saying last night how there is a progression in the length of my hair.
Last week, I had a doctor's appointment and everything seems to be going okay. They are tapering me off a medication and hopefully this Tuesday I will get off my prograf. With that, may come a few other things that I will hopefully be able to get off of next. I had a chicken pox scare last week because my aunt ironically got the chicken pox again. So far, I am on a very strong Anti-viral medication already so hopefully I am protected.
I have to get back to my work, but I know that the fall is here and I really enjoy the leaves changing. Last year, around this time, I was such a mess, just finding out that I had to have a BMT and that I had relapsed.
It is amazing all that one can go through in a year and the important people. I have amazing friends and family and I sincerely love you all. There are so many memories in my head of people that came to visit, of people that took care of me, that just rubbed me to sleep, it still makes me cry and have a tear. On Tuesday, the 3rd of October will mark my 181st day and approximately 6 months. It has been 6 months since I have had my bone marrow transplant and it has been really f*ing hard. And I did not even go through some of the things that some have to go through.
I am 100% male blood, and I have had to switch medications. I had days of throwing up everyday, throwing up every meal. I had days when I wanted everyone to go away from me. Days when I wanted to think about someone or something other than myself. Days when i fought for my life and if you've never had to fight for your life, even if you watched me do it, i saw the fear in your eyes. I have a wall of people that are so special to me that are on my side of the bed, and it completely ruins the symmetry in a room, but that is what people are. They do ruin the symmetry. Even if they keep you balanced, the ones closest sometimes can send you on a really rocky road of terror and love and even anger. I have put many of you through that and many of you even have put me through that these 6 months.
I am crying as I write this because it is amazing to be loved and to feel love for people. As I have said so many times, there are so many people at these clinics, institutes, cancer places, that are alone. And this is a really lonely sickness to go through. THe day of my transplant, there were so many people in my room. I had the people dearest to me there and there were moments, i wanted them to go away. i was so scared. And they were scared too. we were all scared, but we fought that. I know people left my room and cried. I never cry during that time in the hospital. I am a warrior. But now, afterwards, the 100 days, there were days, that I was so scared to go outside, that I felt like a failure that i just paced around my apartment, crying, asking my mom is i was going to be okay. . and she always said "yes". There are times of guilt, of feeling so shitty for not being there for your own friends. When all you want to do is go outside and go somewhere to see someone that is really important and you can't because you are stuck. Stuck and guilt are awful feelings to have. But, it is so important for me to make it known that it is so important to have people and to have the kind words and everything i received. From fake flowers that brightened up my room, to striped socks, to a computer, to cards and company...to many carvel ice cream cakes-to the hands of people..to feeling people's skin...this isn't over and i have many more days to go...and there are days that are still really shitty.
someone gave me these three cards and told me to write on them something i really wanted. and i couldn't do it. i still have the cards, but i really want something different everyday, and to say I want to live. well i do. of course, because it is amazing to live. And it is awful to have an illness that threatens that, but i am learning how to be that adult that learns how to be that child that learns how to be that adult. that takes time to look around and be amazed by the seasons-that thinks of yellow flowers, and gets excited to think of gardening. I enjoy the holidays and celebrate the days. I have lists running in my head all the time of things i have to do.
I know that you can't control other people, and it is hard to sometimes even control your own destiny. But sometimes these illnesses make people a little quirky, I have always been quirky, but I have also always known that I am loyal person who would stand by someone through the really shitty times. And I have so many loyal people that have done that for me. Thank you.
Here is the link to some pictures...
http://www.flickr.com/photos/sayonarabeat/
I must go read and do some work. I am not editing this entry, I am just sending it off as is. These are my true feelings.
I am sorry that it has been a while since I have written.
I am really swamped with school work and dealing with different things. I started doing yoga on September 12th. it is helping with calming down and also just forgetting about the many things that are happening around me to breathe. it is also really great for stretching, i am really rigid from the GVHD, i think or just the transplant in general.
I had an awful dream lastnight, where i did not even have my transplant yet and I got this weird disease that would last 100 days and I had to take all these things for it. It was so weird. It woke me up at 730 am in a worry. My mom, ironically, called me at about 8am, which she never does to tell me my pediatric dentist was on the early show. I missed it because I was brushing my teeth.
I am going to see my mother for her birthday in North Carolina, and I am also going to be doing a walk in north carolina for the smile-forever organization that has two locations. One in New Jersey and one in North Carolina.
Alison has been taking more pictures than I have lately and she has a flickr account. She was saying last night how there is a progression in the length of my hair.
Last week, I had a doctor's appointment and everything seems to be going okay. They are tapering me off a medication and hopefully this Tuesday I will get off my prograf. With that, may come a few other things that I will hopefully be able to get off of next. I had a chicken pox scare last week because my aunt ironically got the chicken pox again. So far, I am on a very strong Anti-viral medication already so hopefully I am protected.
I have to get back to my work, but I know that the fall is here and I really enjoy the leaves changing. Last year, around this time, I was such a mess, just finding out that I had to have a BMT and that I had relapsed.
It is amazing all that one can go through in a year and the important people. I have amazing friends and family and I sincerely love you all. There are so many memories in my head of people that came to visit, of people that took care of me, that just rubbed me to sleep, it still makes me cry and have a tear. On Tuesday, the 3rd of October will mark my 181st day and approximately 6 months. It has been 6 months since I have had my bone marrow transplant and it has been really f*ing hard. And I did not even go through some of the things that some have to go through.
I am 100% male blood, and I have had to switch medications. I had days of throwing up everyday, throwing up every meal. I had days when I wanted everyone to go away from me. Days when I wanted to think about someone or something other than myself. Days when i fought for my life and if you've never had to fight for your life, even if you watched me do it, i saw the fear in your eyes. I have a wall of people that are so special to me that are on my side of the bed, and it completely ruins the symmetry in a room, but that is what people are. They do ruin the symmetry. Even if they keep you balanced, the ones closest sometimes can send you on a really rocky road of terror and love and even anger. I have put many of you through that and many of you even have put me through that these 6 months.
I am crying as I write this because it is amazing to be loved and to feel love for people. As I have said so many times, there are so many people at these clinics, institutes, cancer places, that are alone. And this is a really lonely sickness to go through. THe day of my transplant, there were so many people in my room. I had the people dearest to me there and there were moments, i wanted them to go away. i was so scared. And they were scared too. we were all scared, but we fought that. I know people left my room and cried. I never cry during that time in the hospital. I am a warrior. But now, afterwards, the 100 days, there were days, that I was so scared to go outside, that I felt like a failure that i just paced around my apartment, crying, asking my mom is i was going to be okay. . and she always said "yes". There are times of guilt, of feeling so shitty for not being there for your own friends. When all you want to do is go outside and go somewhere to see someone that is really important and you can't because you are stuck. Stuck and guilt are awful feelings to have. But, it is so important for me to make it known that it is so important to have people and to have the kind words and everything i received. From fake flowers that brightened up my room, to striped socks, to a computer, to cards and company...to many carvel ice cream cakes-to the hands of people..to feeling people's skin...this isn't over and i have many more days to go...and there are days that are still really shitty.
someone gave me these three cards and told me to write on them something i really wanted. and i couldn't do it. i still have the cards, but i really want something different everyday, and to say I want to live. well i do. of course, because it is amazing to live. And it is awful to have an illness that threatens that, but i am learning how to be that adult that learns how to be that child that learns how to be that adult. that takes time to look around and be amazed by the seasons-that thinks of yellow flowers, and gets excited to think of gardening. I enjoy the holidays and celebrate the days. I have lists running in my head all the time of things i have to do.
I know that you can't control other people, and it is hard to sometimes even control your own destiny. But sometimes these illnesses make people a little quirky, I have always been quirky, but I have also always known that I am loyal person who would stand by someone through the really shitty times. And I have so many loyal people that have done that for me. Thank you.
Here is the link to some pictures...
http://www.flickr.com/photos/sayonarabeat/
I must go read and do some work. I am not editing this entry, I am just sending it off as is. These are my true feelings.
posted by Jenn at 12:50 PM
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