One Year-April 5, 2007
Hello,
Today is April 5, 2007. Last year this time, I was waiting for a plane to get in that would have the cells of my donor. The estimated time of transplant was 7:45pm.
My parents, friends and family circled in and out of the room. My best friend and Erica went out to get some food. This was the funny conversation of the day that I remember:
Jenna: I like this song
Erica: It's the Styx
Jenna: Yeah it does stick.
it was one of the few things during the day that made me laugh. There were people in and out of the room and I just watched, feeling very far away from anyone.
Here I was in this small room surrounded by 6-10 people and I felt so far away. I was scared and I was angry. I was bloated and I had so many voices repeating the transplant process. I was stuck, because I had used enough chemo
to destroy my old marrow and I knew there was no turning back. I had to go forward with all these ivs in me and everyone's eyes looking at me with the uncertainty. I thought about how I did not have a will and the only thing that mattered to me was for my niece to have any money that I had which was very little for college and for people near and dear to me have my cds but truly take care of them and listen to them. I never told anyone anything like that. I thought if I wrote it down it would be more real. And I did not want death to be my reality. Maybe it was grandiose feelings even though at that moment, I felt like shit. I had gained 20 lbs of water weight and steroids in 2 days. My eyes looked awful and I could barely walk. I had fellows (fake doctors) coming in telling to be positive and think about next year. It was hard to think about the vomiting I was going to have in the next few hours never mind next year. I hated those lectures and I hated when I had to fight for anti-anxiety medication. I slowly started to learn who could sympathize with my situation in the hospital and who i just had to find ways to listen to and take it in stride. My transplant doctors were amazing and extremely positive. Dr. Donato told me I was the healthiest patient on the floor. And that made me happy and even pushed me to stay at that caliber. That fellow told me she said that to everyone but I would check out everyone and know, I was doing pretty good. Dr. Rowley who is also my transplant doctor would come in and I felt that he brought in fresh air with him. He was on the go. He was flying places. he was going places and he was there every evening to check on me. He would kick everyone out of the room and just talk to me. He would listen to my issues with one nurse who was a real bitch to me, Angela. My mother was in shock when the following day I was fevering after my transplant and this woman told me I had to learn there were other people on this floor after waiting 2 hours for someone to come in CHECK on my fever. I never had her again as a nurse and it is unfortunate anyone has to. She tried to be kind to me the rest of the day and I knew it was only because Dr. Rowley told her she had to.
My doctors, my friends, my family, my girlfriend, and many people I have never met supported me through this transplant and post transplant. My friend/boss from Boston surprised me with a brand new computer at the hospital. I was so excited. Every time I touched it, I would put it back in the box. No one else was allowed to go near it. It was a gold mine to me. I felt like a kid opening presents on xmas day and getting the perfect present. I had my parents and everyone working on the silent auction at the time. My mom's old job sent me this beautiful tower, and my good good friends Mark and Chris Garneau. Their parents sent me a Harry and David tower with delicious chocolates. The fellow kept telling me not to eat chocolate. But I did not listen to him because Dr. Rowley told me I did not have to listen to him. These towers were delicious. Cally made me fake flowers that were so beautiful because I could not have real flowers. My cousins let me borrow their x-box. I had lots of cds and my headphones.
I laid there most of the day/night wanting for my transfusion. I have so much to be grateful for. I have a letter I need to write to my donor. If anyone would like to write to my donor, that would be great. He is saving my life. He is letting me be here for xmas and watch my niece open her present. He is letting me spend time with the people I love and giving me a chance at living a real life.
I had my year check up two days ago and was told many things are still off limits. I really have to wait for 2 years to do the things I need to do. But today I want to cry because I am so happy. I am so lucky. And I am so honored to you all in my life. From the foundation who has helped me with medical expenses to continue to living my life to my girlfriend who signed a lease for a car and spends money every month because I needed that to my parents who do more than most parents ever will, my mother who is the best caregiver you can ever have. she is beyond a mother and became my best friend through this as we would watch tv and she would see me cry and calm me down and tell me it was going to be okay. My father who would get me what i need and play cards with me and get really excited to tell me about sports or go out there and get so many things for my silent auction. To my family who supported me in my life and decisions I make who never question my personal life and stick by me. who have helped me financially, who have helped me emotionally, who have given me a roof over my head when i have needed it and who continue to inspire me with having an amazing family that keeps believing in me and doesn't let me feel alone. i thank you. my brother and sister-who were useless because they match each other. you are the most useful people. i have missed you greatly and i am still a part of you two. my brother who played scrabble and watched horror movies with me, who sends me emails to let me read his brilliant writing and who tells me to make really bad decisions in fantasy baseball like picking someone in the minor leagues! my sister is one of my closest friends. she has had to put a lot on her plate to stay in north carolina and live in my parents' home to maintain it while everyone is up here in NJ. You inspire me and I think it is amazing what you do. To be a mother at 20 years old and now have a full time job, go to school full time and still find time to yell at your child is amazing. You are someone I can call anytime and I call at least 4 times a week. You have had to watch me go through this and I know it takes a lot. I know it takes so much for many people. I cry when I think about it. To my really good friends who have stuck around me and stuck by my side, I love you all. I stayed in NJ to do this transplant because I would not go away from my friends. I have the best friends in the world. I am very lucky. My friends drive hours to see me and it is overwhelming. Jenna drove every week for months from Connecticut, 2.5 hours away to be with me every week. It is incredible. She also calls me Leuky Legs, which only she can get away with. Mark lost his job the first time because he drove down the first weekend I was diagnosed. He didn't tell me he got fired for months later, but he is in a better place now and fuck that job. Chris who saw me every chance he got by train from New York and put on a benefit show. It was a beautiful evening and I know people enjoyed themselves. Erica also would come by train every week and bring really bad movies. But it was funny to watch those really bad movies and just enjoy your company. thank you. Alison, who was the chief of setting up the silent auction. I wanted people to help with the transplant fund but so many people came to help out and went beyond what they needed to do. But it was an enjoyable evening for so many and that was what I also wanted. Everything that night was donated except the price of the meal from the Colonial Inn. Everything else was donated.
So here I am, on benadryll because i am developing antibodies to a vaccination I got and I feel as though I ran a marathon yesterday and did not do any training. I am stuck in my house, not allowed to drive. I was told I could not go to North Carolina for Easter because my father has been sick for over 6 weeks with a weird cold and my doctors believe it is a virus they do not want me to get. So at my year mark, I still feel the restrictions, but IT IS A YEAR POST TRANSPLANT.
I am so happy to be here and be living and be alive. I am so happy you are in my life and I hope to continue my work with helping others get financial help they need when sick. There are so many parts to being sick with a debilitating disease. Watching the family struggle, seeing loved ones fall into depressions, etc. Finances are terrifying. i am still scared of mine, but I am alive. Even when I got the bill for $20,000 in the mail. I was scared/pissed and then I just realized I needed to be grateful to be alive. I have learned that we cannot even control our own lives, nevermind anyone elses. I have seen more things in black and white but realized how much gray there is in life. I have learned that everyone's body and the way they react to things are different. I have lost some friends along the way who could not handle my situation or for whatever reason. I hope they are happy with their decision. I have gained many friendships and many important people. I am lucky to have met such wonderful people.
It is beautiful outside today although it was snowing less than 6 hours ago. the weather is crazy but so is life. It is completely unpredictable. We are always trying to predict everything, but we can't. We can only keep living and keep loving.
Happy 1 year to me. Thank you to you.
Love,
Jenn
Today is April 5, 2007. Last year this time, I was waiting for a plane to get in that would have the cells of my donor. The estimated time of transplant was 7:45pm.
My parents, friends and family circled in and out of the room. My best friend and Erica went out to get some food. This was the funny conversation of the day that I remember:
Jenna: I like this song
Erica: It's the Styx
Jenna: Yeah it does stick.
it was one of the few things during the day that made me laugh. There were people in and out of the room and I just watched, feeling very far away from anyone.
Here I was in this small room surrounded by 6-10 people and I felt so far away. I was scared and I was angry. I was bloated and I had so many voices repeating the transplant process. I was stuck, because I had used enough chemo
to destroy my old marrow and I knew there was no turning back. I had to go forward with all these ivs in me and everyone's eyes looking at me with the uncertainty. I thought about how I did not have a will and the only thing that mattered to me was for my niece to have any money that I had which was very little for college and for people near and dear to me have my cds but truly take care of them and listen to them. I never told anyone anything like that. I thought if I wrote it down it would be more real. And I did not want death to be my reality. Maybe it was grandiose feelings even though at that moment, I felt like shit. I had gained 20 lbs of water weight and steroids in 2 days. My eyes looked awful and I could barely walk. I had fellows (fake doctors) coming in telling to be positive and think about next year. It was hard to think about the vomiting I was going to have in the next few hours never mind next year. I hated those lectures and I hated when I had to fight for anti-anxiety medication. I slowly started to learn who could sympathize with my situation in the hospital and who i just had to find ways to listen to and take it in stride. My transplant doctors were amazing and extremely positive. Dr. Donato told me I was the healthiest patient on the floor. And that made me happy and even pushed me to stay at that caliber. That fellow told me she said that to everyone but I would check out everyone and know, I was doing pretty good. Dr. Rowley who is also my transplant doctor would come in and I felt that he brought in fresh air with him. He was on the go. He was flying places. he was going places and he was there every evening to check on me. He would kick everyone out of the room and just talk to me. He would listen to my issues with one nurse who was a real bitch to me, Angela. My mother was in shock when the following day I was fevering after my transplant and this woman told me I had to learn there were other people on this floor after waiting 2 hours for someone to come in CHECK on my fever. I never had her again as a nurse and it is unfortunate anyone has to. She tried to be kind to me the rest of the day and I knew it was only because Dr. Rowley told her she had to.
My doctors, my friends, my family, my girlfriend, and many people I have never met supported me through this transplant and post transplant. My friend/boss from Boston surprised me with a brand new computer at the hospital. I was so excited. Every time I touched it, I would put it back in the box. No one else was allowed to go near it. It was a gold mine to me. I felt like a kid opening presents on xmas day and getting the perfect present. I had my parents and everyone working on the silent auction at the time. My mom's old job sent me this beautiful tower, and my good good friends Mark and Chris Garneau. Their parents sent me a Harry and David tower with delicious chocolates. The fellow kept telling me not to eat chocolate. But I did not listen to him because Dr. Rowley told me I did not have to listen to him. These towers were delicious. Cally made me fake flowers that were so beautiful because I could not have real flowers. My cousins let me borrow their x-box. I had lots of cds and my headphones.
I laid there most of the day/night wanting for my transfusion. I have so much to be grateful for. I have a letter I need to write to my donor. If anyone would like to write to my donor, that would be great. He is saving my life. He is letting me be here for xmas and watch my niece open her present. He is letting me spend time with the people I love and giving me a chance at living a real life.
I had my year check up two days ago and was told many things are still off limits. I really have to wait for 2 years to do the things I need to do. But today I want to cry because I am so happy. I am so lucky. And I am so honored to you all in my life. From the foundation who has helped me with medical expenses to continue to living my life to my girlfriend who signed a lease for a car and spends money every month because I needed that to my parents who do more than most parents ever will, my mother who is the best caregiver you can ever have. she is beyond a mother and became my best friend through this as we would watch tv and she would see me cry and calm me down and tell me it was going to be okay. My father who would get me what i need and play cards with me and get really excited to tell me about sports or go out there and get so many things for my silent auction. To my family who supported me in my life and decisions I make who never question my personal life and stick by me. who have helped me financially, who have helped me emotionally, who have given me a roof over my head when i have needed it and who continue to inspire me with having an amazing family that keeps believing in me and doesn't let me feel alone. i thank you. my brother and sister-who were useless because they match each other. you are the most useful people. i have missed you greatly and i am still a part of you two. my brother who played scrabble and watched horror movies with me, who sends me emails to let me read his brilliant writing and who tells me to make really bad decisions in fantasy baseball like picking someone in the minor leagues! my sister is one of my closest friends. she has had to put a lot on her plate to stay in north carolina and live in my parents' home to maintain it while everyone is up here in NJ. You inspire me and I think it is amazing what you do. To be a mother at 20 years old and now have a full time job, go to school full time and still find time to yell at your child is amazing. You are someone I can call anytime and I call at least 4 times a week. You have had to watch me go through this and I know it takes a lot. I know it takes so much for many people. I cry when I think about it. To my really good friends who have stuck around me and stuck by my side, I love you all. I stayed in NJ to do this transplant because I would not go away from my friends. I have the best friends in the world. I am very lucky. My friends drive hours to see me and it is overwhelming. Jenna drove every week for months from Connecticut, 2.5 hours away to be with me every week. It is incredible. She also calls me Leuky Legs, which only she can get away with. Mark lost his job the first time because he drove down the first weekend I was diagnosed. He didn't tell me he got fired for months later, but he is in a better place now and fuck that job. Chris who saw me every chance he got by train from New York and put on a benefit show. It was a beautiful evening and I know people enjoyed themselves. Erica also would come by train every week and bring really bad movies. But it was funny to watch those really bad movies and just enjoy your company. thank you. Alison, who was the chief of setting up the silent auction. I wanted people to help with the transplant fund but so many people came to help out and went beyond what they needed to do. But it was an enjoyable evening for so many and that was what I also wanted. Everything that night was donated except the price of the meal from the Colonial Inn. Everything else was donated.
So here I am, on benadryll because i am developing antibodies to a vaccination I got and I feel as though I ran a marathon yesterday and did not do any training. I am stuck in my house, not allowed to drive. I was told I could not go to North Carolina for Easter because my father has been sick for over 6 weeks with a weird cold and my doctors believe it is a virus they do not want me to get. So at my year mark, I still feel the restrictions, but IT IS A YEAR POST TRANSPLANT.
I am so happy to be here and be living and be alive. I am so happy you are in my life and I hope to continue my work with helping others get financial help they need when sick. There are so many parts to being sick with a debilitating disease. Watching the family struggle, seeing loved ones fall into depressions, etc. Finances are terrifying. i am still scared of mine, but I am alive. Even when I got the bill for $20,000 in the mail. I was scared/pissed and then I just realized I needed to be grateful to be alive. I have learned that we cannot even control our own lives, nevermind anyone elses. I have seen more things in black and white but realized how much gray there is in life. I have learned that everyone's body and the way they react to things are different. I have lost some friends along the way who could not handle my situation or for whatever reason. I hope they are happy with their decision. I have gained many friendships and many important people. I am lucky to have met such wonderful people.
It is beautiful outside today although it was snowing less than 6 hours ago. the weather is crazy but so is life. It is completely unpredictable. We are always trying to predict everything, but we can't. We can only keep living and keep loving.
Happy 1 year to me. Thank you to you.
Love,
Jenn
posted by Jenn at 2:49 PM
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