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.

rain rain go away

actually, when it is rainning, i do not typically have to cover up with sunblock as much, so i sorta like the rain.
i have started online classes and they have made me really busy. i have to meet with the chairman of psychology next week to start my research so i can graduate.
i went apple picking, it was really nice. alison has some pictures up on her flickr. I think the link is in this block already.
i go back to the doctor on tuesday of next week, in the early morning.
i am going to try to make apple pie. i must go do some dishes and organize my room right now, and continue to do some work.
i hope everyone is doing well.
love
jenn

...

hello,
sorry i have not written in a few weeks. things have been going 'okay'. Alison and I went to Boston 08/25-08/27. We stayed with our good friends Mark and Pat-and their three awesome animals. 2 dogs, sydney and lexi and 1 cat, Mr. Jones. I loved being close to Mark and Pat, and it was so great to have animals around. On Saturday, I went to Judy's birthday party. I got to see Christopher and Alexander. It was a really great time to see them, but CHristopher made it difficulted and complicated. He is autistic, but he was in a rare form and over-excited. Alison and I were there longer than I had expected but it was a really nice night and I was really excited to see Judy and the boys. ON Sunday, Mark, Pat, Alison and I went food shopping and brought some bbq goods over to Judy's and had a bbq, played some games. Before we knew it, it was 7:15pm and Alison and I had to get on the road back to NJ. THe ride home was very scary. It was pouring in Connecticut and there was major flooding. We made it home slower than expected but we were okay, so that is all that mattered.
I've been busy with getting ready to do some school work and getting everything together. I've also been trying to deal with this $19,000 hospital bill that I have. I have just applied to Charity Care because everything else seems to have needed to be done prior to the transplant and being that Hackensack was under the impression that it was going to be 100% covered when I was in the hospital, we didn't do anything. SO, I will see the response I get. If not, I may have to do another fundraise or I may write letters to people who have supported me before to ask to help me out. I do have some of this money but not all of it. I was stressed about it, but I will deal with what I have to when the time comes.
I just do not want that to go into collections. SO I am trying to expedite the process. They first told me they could not see me until October 10th, 6 weeks, after speaking to someone. I had them send me the forms and sent everything in, and cancelled my appointment. That is too much time.
This past weekend, we stayed at home because the weather didn't look that great. We went to eat and Alison wanted to go shopping. We went to Woodbury Commons, but were not there for too long on Sunday because everyone decided that is where they should go. Then Sunday night, Alison's parents came to Hoboken for dinner and we went to Trinity, and it was really yummy and really nice outside. It was nice spending some time with them. We had not seen them in a while. Her sister also showed up to quickly say hi, because she was in Hoboken, and that is rare. Alison's sister, Michele is actually doing the triatholon in Westchester, NY on Sunday September 17, 2006. She is raising money for the Leukemia/Lymphoma society. It is amazing that she is doing a triatholon and more amazing that she is trying to raise money/awareness for Leukemia/Lymphoma. Alison's sister and i have not really had a chance to get to know each other. I do hope that changes. But regardless, I am happy to be going next Sunday to watch the event, even for a little while.
On Monday, I went to breakfast with Alison and after the breakfast, while still at the little cafe in Hoboken, I took my pills. Alison and I were walking to Kings supermarket because we had barely any food in our apt, and my hands started to get hives on them. I got panicky about this and we decided to go home instead. Alison thought I was just having anxiety but I was convinced something else was going on. I took an antianxiety medication but my legs started to get these hives on them. i was nervous about why this was happening and couldn't figure out what I had eaten that could possibly do this. Eventually the hives went away, and I had calmed down, and I took a shower. After the shower, I just put on my pjs, and was on my computer. All of a sudden, my feet started to itch. I looked down and all my toes, looked like they had been bitten by bugs, but this hadn't happened. I was nervous it GVHD or something was going on. So I called the doctor on call and when she called back, she said it could be GVHD or a viral infection. I thought I was allergic to something, but I asked if i Could take benadryll and she said "yes, even an atarax"-which is stronger, but I hate the way that makes me feel. So i took a benadryll and everything went away and i slept for quite a while.
So on Tuesday, the 5th, I went to see my dr. Dr. Rowley and as he is walking in, I am taking my shoes and socks off. And I said "you're probably wondering why i am doing this." and he just said "you're just getting comfy." and we laughed, but I told him what happened and he said "GVHD wouldn't go away like that, it sounds like you had an allergic reaction to something." ..My counts were all pretty good. My platelets are low, but they are higher and they are definitely at an okay level. My WBC was 6.7, my hemoglobin was 15.2.-my mom said "wow, that is like a man's hemoglobing, well i guess you are like a man" ha. i forgot about that -and my platelets were at 107,000.
So I had a good appt. He said 4 more weeks of prograf and as long as things stay good, I can get off of that.
So on Wednesday, I had an english muffin and some cream cheese and took my medications. Then i started to break out.
I was like "what do i do on Monday and wednesday?" and right away, I realized I take a medication called bactrim. I called up Hackensack and talked to my nurse practitioner and I said "Pam, is there anyway that all of a sudden, I can be allergic to Bactrim?" -and she said "absolutely"-I have been on this for 5 months now.
SO they prescribed a new medication to me that I will start-and hopefully we caught what was causing that.
So classes also started on Tuesday, mostly online. I have been reading a lot and keeping up with things. I also have this research practicum that I am doing with the chair of psychology. i actually have to get back to him.
SO all in all, things are going okay. With the exception of this massive bill, everything is alright right now.
Oh one thing, there is someone who got in touch with me, saying there is this 23 year old who needs a bone marrow transplant and no one matches her in the registry. IF YOU HAVEN'T REGISTERED< pLEASE DO SO. I will try to get more info.
I am really busy right now, but might try to get some kind of bone marrow drive together. I am waiting for more info on this girl. This woman contacted me because she liked one of my flyers.
Well I must go take my pills right now. Have a good day, a good weekend. I will try to write more.
Sincerely
Jenn