i want a puggle not a bone marrow

unedited. the question i was asked to answer: In what way did your transplant experience impact who you are today?

2011-09-10T10:07:00.002-04:00

My transplant affects my whole being today. I named my dog after my transplant doctor because I told him, “I am naming my puppy after you if I live.” I see how amazing our medical world is. I realize how doctors are human and the littlest mistake can cause a grave situation. I believe in hope. I believe in love. What I went through has allowed me to have an experience with cancer that no textbook could ever allow me to experience. It has given me the ability to love as much as I do now, to laugh as hard as I do now and to be grateful for every breath I have. I have the best family a person could ask for, the best friends a person could find and a loving partner that stuck by me through everything (and that wasn’t easy). The outpouring of love and concern from the community that occurs in crisis only illuminates the beautiful people we are. Being young and seeing that fear in your parents’ eyes is nothing you ever forget. My mother moved in with my girlfriend and me for nine months in our small apartment in Hoboken, NJ. She stayed in the hospital with me almost every night. She would tell me things were going to be okay when I asked her, “Am I going to be okay?” My father always looked to when things would get better and always thought things could be worse. I have inherited the ability to be positive and to keeping fighting inside from him. My brother and sister moved down to North Carolina to take care of my parents’ house. They made me want to live even more to watch my little niece grow up and not leave them so young. My family brought me food, told me jokes and allowed my parents to stay with them. My friends drove from Connecticut, Massachusetts, New York and NJ every week to see me.
I had a psychiatrist say to me one time, “Leukemia will be like a book on a shelf. You will pass it and know it is there.” I only saw him once and I disagreed with him immediately. I am in remission but my cancer book is inside of me. It is a compartment in my heart. It is filled with many chapters, that I hope to put in a book someday, but I never just pass it on a shelf. I wrote it.

5! 4.5.6

2011-04-05T10:39:00.001-04:00

Five years. Wow. This is a HUGE milestone. Every day of my life is special. I think about the poster I made numbered 1 through 100; I would cross out each day until I would get to 100. Day +100 was going to be my huge milestone. Then I was looking forward to six months where I could get off some of the pills I had to take everyday. Looking back, days turned into weeks that turned into months. But every minute meant something at the beginning. I remember my hospital routine. Yes I had stayed in hospital rooms enough to have a routine. 5 am get up, walk or ride the bike until 5:30. Walking 32 laps would be one mile-I didn’t do that much, it was really boring and hard. I rode the bike with my headphones on and would tune everything out. I wanted to be a good patient. I wanted to know that even if I didn’t make it, I tried so hard for me and for everyone I loved that I didn’t want to leave. Some mornings, I would think about who would get which CD of mine because those were golden tickets as far as I was concerned. Then I’d stop myself from thinking that way. But it never left me. Death felt so close sometimes to me. And that sickness, although I can’t feel it the way I used to is nothing I will ever forget. But in my heart and mind, I think of all the people that helped me along the way. Helped isn’t even the right word, saved is.

My journey started on December 3, 2003 when I was first diagnosed with leukemia. I learned very quickly I wanted to live as a functional person with a working brain. When I went into acute respiratory failure, I kept saying in my head, “God or whoever you are, take me if you make me a vegetable…I don’t want to be here if I can’t know what is going on.” And from that day forward, I learned as much as I could. I wanted to understand why this was happening, what kind of recovery my body would need, approximately how many days rest I would need before my counts would go up and I asked for every copy of lab work I could get. I would chart everything and go through every count. I would ask all sorts of questions. I would argue with doctors about giving me blood transfusions. I advocated for the quality of my life as best I could versus the quantity. I am forever indebted to my doctors and to the nurses who spent hours with me and who allowed me to be me. It was hard to transform my life from being a fighter to being human again. For two years after my transplant, I felt like I had armor on me. I had to slowly allow myself to feel again and to be human. I had been poked, prodded, opened up and through a war.

For my 30th birthday, I bought myself a road bike. And I remember riding on 9W one day by myself. The composition of the sun on the landscape was exquisite. It was simple but it gave me a feeling of freedom. I started to cry as I thought about all the chemo and nights of sweating in the hospital rooms. And here I was, outside, riding on a road, breathing fresh air and smiling. I was happy to be alive and to know the amazing people I know. And I know some real incredible people who live in a special place in my heart. If five years ago, my doctor came in my room and said, “Five years from now you will be bike racing and going to law school,” I don’t know what my response would be. I could barely focus on what was going to happen tomorrow at that point.

I am motivated by the genuine love I feel around my life everyday. The thank you list continues to expand. My stem cell transplant donor, an amazing man in Sweden unrelated to me. You have saved my life. Words can't encompass the gratitude. Thank you.
My family, you know that you are my rock, my friends, you know you are my stars, my dog, you know you are my dog, and Alison, you are my tea and oranges (I don’t know if you knew that). I love you all.

Five years ago: Take a look at April 2006. How far I’ve come with all of you.

APRIL 2006 BLOG POSTS

"Who looks outside, dreams; Who looks inside, awakens." Carl Jung

Love,
Jenn (Falcon)

it is about time.

2009-01-22T11:10:00.000-05:00

Hello,

As I sat, watching the inauguration, listening to "air and simple gifts" performed by yo-yo ma, itzhak Perlman, Anthony McGill and Gabriella Montero, I was inspired to write to you. I have not updated my blog or sent out an email in many months. But today I feel a need to reiterate how important you have made my life. It is the air I breathe and the simple gifts in life that allow me to stand where I do today.

On a monthly basis, I get an email or a message from someone who lets me know they have read my blog to help them get through their own transplant or their child's transplant. I may get an email from someone who knows someone that is about to have a stem cell transplant or from someone who is a friend that does not know how to deal with their best friend going through a transplant.

In the past few months, I have ventured into becoming the director for a non-profit organization called Smile Forever Foundation. This foundation's mission is to help patients and families financially who are battling cancer, autism or another disabling disease.
Most of our recipients are in northern NJ but geographical boundaries do not get in the way. I got a call the other day from a social worker with two teenage siblings who both need heart transplants from Connecticut who are going to Boston, MA.

On February 20th, I turn 30 and on April 5th will be my three years since my transplant. So I am some where in between a three year old and a 30 year old.

I have been very busy lately. My dog, Rowley, named after my transplant doctor, is quite an energetic character. Thank god he has a sister, Cassie, he plays with almost everyday to wear him out.

As the director of the Smile Forever Foundation, I would like to expand the mailing list, brainstorm better fundraising ideas and bring in more money to help more patients. Currently, the foundation is giving to 14 families and other organizations this month. In the four years of existence, we have raised over $500,000 and given to more than 200 families.

Many of you have been very valuable in my life and now I am turning to you to see if any of you would like to help me. I would like to bring volunteers and get a few committees involved with helping me.

The most important committee I need right now is a few people that would like to be a part of my brainstorming committee. In the spring, we typically have a walk-or an event that brings in a substantial amount of money. However, this year, we would like to steer away from the walk and do something more creative-and something may really want to come to.

I have May 17th at Stone Point Park in Old Tappan, NJ booked right now. I have thought about trying to get some musical talent or a play in the park, but would love ideas. Or if anyone knows of anybody that may be interested.

I am also trying to put together a few restaurants to have fundraisers for the foundation.

I spend many hours working for the foundation and want to expand the Smile Forever Foundation.

Some Examples of the help recently.

I am meeting a woman on Friday that only has a few more months to live. Her children are 20 and 22 years old.
The foundation is sending a check to a family in Cranford, NJ to a 15 year old boy who has bone cancer and does not have much longer to live.
He is obsessed with PEZ so we are helping the family go to the Northeast Pez Convention in Connecticut.
There are many families we have helped with therapy for their autistic children. We have given almost $30,000 to a public school for children with special needs to allow for extracurricular programs, funded their year book and field trips.
The day before Thanksgiving, we gave money to a family with a little boy in the Bergen County area who is blind from cancer he had when he was 2.5 years old. He is now 12 and is currently dealing with another cancer. He has had three cancers in his 12 years.
In December we gave a family money-the father has a brain tumor-his prognosis is grim-possibly 9 months-He will leave behind a 3, 8 and 11 year old.

This foundation helped me greatly when I was sick. Mr. Gonnelli, the president of the foundation, lost his wife to breast cancer. Even when she was sick, she still helped others and died smiling. Hence Smile Forever.

People are coming to us and saying the big organizations have exhausted their funds and cannot help. Smile Forever is a grass roots organization but typically we give more to the families than many of the bigger organizations give with an
average of $2000-$3000 and sometimes people will ask us for help again.

Most of the money received is given to families with the exception of administrative fees and the cost of our events.
If anyone would like to do a corporate match, we welcome them. The foundation is a 501 c 3 with a tax id.

On a daily basis, I speak to someone who is going through something terrible. But I believe in this foundation. I love this foundation and there is not anything else I would rather be doing.

I know people are busy. I know the economy is not great. But I know there are some people who may want to help out this foundation. I welcome you and would love to speak with you or meet you.

If anyone has ideas or knows people, please contact me. If anyone would like to do their own fundraising event to help raise money for the foundation, we welcome that.

I hope you are healthy. I spoke to a woman the other day who has advanced stages of MS. She cannot walk, she cannot use her arms-her sons do almost everything for her-the cooking the cleaning-they are
12 and 13 years old. She said to me, "we don't have a lot but at least I have healthy kids."

I thank you for inspiring me. I thank you because you make me see this world as a beautiful positive place. And you all are my foundation that allow me to have the confidence, the strength and the
will power to live with the blood of a 3 year old and the heart of a survivor.

With love,
Jennifer

2 years post transplant

2008-05-22T10:43:00.001-04:00

April 5, 2008 marked two years that I had my bone marrow transplant. If you can believe it, I have felt speechless and unable to put into words
how special it feels to be alive. Every stepping stone has become a mile stone, but my secret success of statistical data and research led me to
know making it to the two year mark was crucial.
I went to my 2 year appointment at the transplant center thinking my doctor (Dr. Rowley who I named my puppy after) would be present. I typically
tell him to keep his mouth shut with his terrible statistics but I hoped he would be there because the numbers get better after two years.
I have been compiling a two year mix cd to send out but have not completed it yet, but very shortly I will be mailing them out. I have an extensive mailing
list through the years, but please email me your address if you'd like one.
Yesterday, I got an email from the geneticist (the person who dealt with the National Marrow Program in coordinating my donor and my hospital to make sure
I would get the transplant properly) who attached a faxed paper with my donor's information.
After two years, I found out my donor is from Sweden. Of course, last night I was coming up with all the swedish things I could and taking GREAT pride in them now.
It was so intense and a happy moment for me. This person gave me life and allows me to continue my life on earth with you.
When it comes down to why we live, I am sure we may have different reasons, but for me, I know it is the people in my life.
Today i had a photo shoot for an article that will be in a local magazine about young and upcoming people doing things in their community. For me, it is the Smile
Forever Organization. The photographer told me he was always so happy to see someone "winning the battle".
As much as I have wanted to "kill" cancer in my body, leukemia has become a part of me. It has changed my life. It has opened my eyes to so many wonderful
things and people.
I have learned that I cannot just be a human being but I must be a human doing.
Thank you for being a part of my life. i love you and i thank you.

love,
jenn

I got a puggle and a bone marrow

2007-10-19T09:55:00.000-04:00

September 23 I finally was able to get a puppy! He is a puggle, part pug and part beagle.
His name is Rowley named after my transplant doctor. I am in love with him. He is getting bigger, but won't get too big.
I have not seen my transplant doctor for almost 3 months. I go next week for my check up. Also the Smile Forever Dinner is next week on Thursday, October 25. www.smile-forever.org

Having a puppy is a lot of work. I am trying to learn how to manage my time with things I am doing and making sure he gets attention, to go out, etc.

This is a huge stepping stone for me to have a puppy. This month is also my 18 month mark which was my personal stepping stone.

Love,
jenn

kayaking

2007-08-26T23:02:00.000-04:00

I know it has been months since I have written. I went to the doctor a few weeks ago and was told I did not
have to come back for 3 months.
I have spent almost the last four years going to a doctor every month. my doctor asked
if I could handle it. I told her I will get in touch with her or my therapist if it is really bothering me. but so far
it feels great. I don't have to go back to the doctor until October! This is another stepping stone.
I am just sitting at the Castine Inn in castine, Maine. I am going on a three hour kayak adventure tomorrow.
I am a bit apprehensive about this, but I feel that it will be a good challenge. I have been in Prince Edward Island
for almost a week in Canada. The waves were no good for boogie boarding, which left me disappointed, but
it was beautiful there. It's motto is "the gentle island". There was something gentle.

The summer is almost ending, as September rolls around. The maine air smelt a bit like fall and I enjoyed the crisp
feeling of the weather.

I am exhausted from my journeys and I am happy to feel tired from travel instead of chemotherapy.

I wish I could have a cottage up in the country near the water (and some big waves). I must sleep. I need to get up early for
my little trip tomorrow. Then I go to boston for the evening. then back on a plane to Newark on Tuesday morning. early.

My aunt told me the other day when I was two or three, she brought me to the ocean for the first time. I stood there with my hands on my
hips and said, "i can't go in here.."
She asked me, "Why?"
I told her, "Because this pool is too big for me."
She then told me I went in and loved it. i am so grateful to finally swim and be near water again.
I am so lucky for many things in my life and the beauty all around me. I am thankful for people that make this life more beautiful.

it has been a while

2007-06-22T04:23:00.000-04:00

it is late and i haven't updated in so long.
i have graduated with a ceremony in madison square garden.
i helped with the Smile Forever walk and the event raised more than ever before! it has been amazing.
i am in boston now until next week on Friday and it is really nice to be here. I played Wii tonight and ate from my fav. place garden of eden.
i arrived here on Tuesday and took the train by myself which was quite an accomplishment.
I've been sleeping until 11am here because it is quieter.
I have such a strange relationship with Boston. But right now, it feels great to be here and the weather is good.
I went to the doctor last week. I had to get more vaccinations.
My doctor told me to start focusing on what i want to do five years from now and he told me that the further away from this crap i get the less anxiety. he said crap and then apologized for this language.
i am going to start studying for the Lsat.
law school, some golf lessons.
for now it is sleep.
i will update more often.
love,
jenn

One Year-April 5, 2007

2007-04-05T14:49:00.001-04:00

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

when i look to the sky

2007-03-22T09:16:00.000-04:00

it has been a while since i have written. i have been helping out an organization called Smile Forever. i actually created the website for them, which is a first time but i taught myself. i have been so lucky to find something to do while i am not able to work.
i have some mild chronic gvhd right now and mostly is affecting my eyes with dry eyes, so i am on a regimen of taking 4 eye drops a day in each eye and then a steroid eye drop at night. a bit of mild skin gvhd, but my doctor tells me that having a little bit of gvhd is a good thing. gvhd means graft versus host disesase.
but if you'd like to check out the website, it is http://www.smile-forever.org
i finally brought my bike to get a tune up becuase i want to start riding again, and i am really excited about this.
my new apartment is more quiet and i am enjoying the suburbs. my friend told me that someone asked how i was doing and she responded, "she is going through menopause and has moved to the suburbs!" I don't know about that response but it is true. i have been declared in menopause which hit me more abruptly and made me sad for a few days more than i thought it would. but luckily, i did not have many of the effects or if i did they were interlinked with my chemo so i just assumed it was the chemotherapy effects.
i have been going to a lot of doctors appointments. i had a minor surgery to remove a mole on my back. so for a few weeks, i had to go there once a week. then i had to deal with eye doctors and my own transplant doctors.
i have joined some leukemia/lymphoma message boards and was told by my doctor to wait until a year. I told her that was next month and she said another year. i have followed some people that have gone down a really horrible path. i realize how lucky i am.
but i believe i am so lucky because i have had the love and support of so many people. i believe having my mom be with me everyday and supporting me the way she did helped me survive this. i believe the support, the phone calls, the letters, the outpouring of love kept me going. OF course the people closest to me and my little baby niece who is now 5, taylor.
i feel as i have watched her grow i have had my own growth and i feel differently and have learned the acceptance of many things.
i have become involved with this organization because I realize how hard it is to get financial aid and how difficult it still is for me sometimes to feel secure financially. Also the pain in a parent's eyes as they are left to struggle with the emotions of watching a child go through this and then also have to worry about how to financially handle it. it is disgusting and sad.
i have been through quite a few hospital settings and the amazing hospitals i have been through, the social workers are over-worked and can't give the proper attention to the financial aid and the emotional aid to a patient. They should be two different people. I do not want the person who I discuss my emotions and feelings with talking to me about my finances. I separated myself from having a therapist at my hospital last November. I met my therapist through a group therapy that I was in.
Yesterday when I had therapy I felt so much calmer, different than I had felt in months. Now it may be the ativan but I feel that my mind is settling and also has a way to talk about different things.
I am only one year out of transplant and still scared. On April 3rd, I have a series of tests and also I get my one year immunizations.
I hope things continue on the path I am on.
I know it can be hard to understand this war that happens as a stem cell transplant patient. The war,the understanding that other transplant patients have or the people that sat in my room and watched me go through vomiting every meal and the headaches, etc. But as hard as it is, I have been so lucky to have people who have been by my side and i have loved greatly.
I have been busy but I plan to write a book that I have started because it is needed.
And my family and friends, I still need you immensely.
I love you,
Jenn

happy birthday rebecca 03/14/07

2007-03-22T09:08:00.000-04:00

June 14, 2004 was a surreal day for me as my mother called me to let
me know rebecca had passed away. She told me she took her own life. I
went hysterical and i could not stop crying. But I was really hard to
have a grasp and there are times still when I feel that rebecca
understands what I go through more than most. Reba, as Jenna would
call her, lit up my life and so many others. Her smile was contagious
and nothing she did was ever questioned.
As my own road has gone down this path of cancer and transplant, I
occasionally talk to Rebecca especially while driving and blasting
music on a summer/spring day when the sunroof is open and there are
no barriers. That is the way rebecca let us all feel, free.
But unfortunately, illness can make you become a prisoner.
Today was the first day I went to visit Rebecca alone since her
funeral in June. That day, as we drove into the cemetery gates, I
broke down in an hysterical cry and I felt like I had to put myself
together and a part of me felt ashamed that I could have been more of
a friend to Rebecca. The what ifs and the how comes circulate the
mind but there is a peacefulness. I wanted to do something weird and
different. I didn't want to follow this jewish traditional gathering.
I wanted to crawl into the box, the coffin and hug her one more time
and not be there with family members, my sister, her best friend,
reading eulogies. I wanted to laugh with her and say 'fuck this shit'.

When I relapsed I found myself terrified when the doctors told me I
would have to be on lots of steroids. Immediately, my mind went to
Rebecca. The future may or may not lead me into needing steroids but
I have been a very very lucky person who has not needed steroids
through my post transplant so far. The massive doses, i mean, 160-200
mg a day. That is a lot. And I have believed the reason for this is
because Rebecca watches over me and has helped protect me. I believe
Rebecca and I had a friendship that was special and I finally have
come to realize that it was time to stop being regretful for what I
have not done but for what I can do.

So today was Rebecca's birthday. And I remember one night, she came
over to my friend's chris' house and was smoking cigarettes upset
because people had forgotten her birthday. I remember her birthday
and her deathday every year. I sometimes thought maybe there was some
3 month correlation between them and then did not know if she knew
she ended her life on flag day. So today, I went to a beautiful
florist and I told him, I needed something funky and not bland. I was
going to a cemetary, but these flowers needed to feel like they were
having a party because it was my sister's best friend's birthday and
a close friend to me. He put every flower in a water holder with
spikes because I told him I hated those cemetery holders. So off I
went to therapy and then to Long Island to see Rebecca. It took
forever, the traffic sucked. I listened to music and through about
seeing Rebecca now. I was scared and I did this alone and I felt free
about this.

I finally arrived at the cemetery at about 3:15pm. I wanted to bring
my camera but I forgot. I walked over and I saw that tree, a tree
that I remembered seeing Rebecca's mom standing near and I was
watching her hysterical. And I felt so uncomfortable in my funeral
attire that day. I felt so much more comfortable there today. Jeans
that I was going to lean beside her gravesite. And Alison told me to
put pebbles or rocks on it so I did for every person. So I forgot
where it was and left info in the car and finally found it. Rebecca
Michele Eisen and I felt like I had not seen my friend in a really
long time. There were some stones, 3 on the grave. I kneeled down
next to the grave and I started crying. My pants were getting muddied
and I had also taken some pebbles from trees near the parking lot, a
pocketful. I put them down and I said this was for me, my sister,
alyson, taylor, my mom, my dad, my brother, alison, jenna, chris and
our friends. I opened up the flowers and just set them up all around
it with colors. And I sat there on the cellophane from the flowers
and I started crying and crying and crying. I had a bottle of water
and I poured some on the "love never dies" and near her and I took a
drink. I thought we could have a drink of water together and then I
just started to say outloud "i love you". repeatedly.
Right beside me there was a stick that looked like a y.
In front of her grave, in front of the flowers, i stuck it in the
ground, because sometimes i feel like "why?"
Then I took a few stones and next to sister, I put a pebble for my
sister, because they were like sisters. Next to Aunt, I put a stone
for my niece because Rebecca was an Aunt to my niece she was a part
of our family. and next to friend, i put one for me and then I put
the rest around it and put them around the word. I told her happy
birthday.

I looked up and saw another tree and I said, this is so "six feet
under" like the show and started to laugh.

I sat there and I wanted to lay there and it was beautiful and it was
painful and it was fulfilling and freeing.

i went into the information session and read the rules AFTER i
basically did whatever I wanted to.

I went into the bathroom and there was this really ugly green couch,
and I just sat. no reason. I just sad, "fuck it, let me sit". And
that couch was one of the most comfortable couches, I have ever sat
on. I just sat there and thought to myself, "this is a really
comfortable couch. wow." I then went out, no one was at the
information desk, so i took a jewish calendar and then got a map of
how to find grave sites there.

I opened my sunroof, blasted some music and left. Rebecca still feels
like she is with me.

Here are some pictures. i forgot my camera so they are off my camera
phone.

Happy birthday Rebecca,
I love you

~jenn

email i sent out the other day

2007-02-23T09:53:00.000-05:00

Hello,
I know it has been a while since I have written. I have been moving to a new apartment, which is always more work than it seems.
Yesterday was my birthday and it has been one of my more exciting birthdays. It had nothing to do with presents, but rather to living life and being alive.
I felt like a little child on Monday night. I had my own countdown.
This past year, 27 years old, I feel l have been holding my breath. And finally yesterday I felt like I let it out a little bit. I know there is much more to go, but it felt like a
proud stepping stone to me.
I felt free.
Some people consider their transplant a second birthday, but I don't. My anniversary for my transplant will be April 5, 2006. And that will be a very important day, but not the day that
my mother held me in her hands for the first time and realized life as she knew it was going to CHANGE. I was late, typical.
My friends and family continue to get me through this and allow me to talk through my hard times.
i thank you all.
I have a check up on March 6 and at that point I will be 11 months post transplant.
I had a dermatology appointment last week and I need to get a mole removed that is potentially pre-cancerous.
It has been beautiful to see people helping and willing to do what is necessary for me. Times of crisis have shown
me the true human spirit.
As Freud said, "In the small matters trust the mind, in the large ones the heart..."
I have realized the strength of love and it is because of you that I realize that.

Sincerely,

~jenn

my graduation speech

2007-01-10T20:57:00.000-05:00

Good evening everybody. Two weeks ago, Leah Weich called me up and asked if I would be the graduation speaker. Right away, I said “yes” and then right after I hung up, I said “oh no”. OH one more thing, she told me it had to be twenty minutes long. Twenty minutes!! This should be no problem coming from Lang where we have to give these presentations in class but to stand up in front of people and talk without anyone talking back for 20 minutes. I got nervous and called my mother who was so happy for me. But then when I told her it was twenty minutes, she asked me what I was going to talk about for twenty minutes. I said “myself”. She thought I would have no problem.

I actually will only speak briefly about me to introduce myself. Many of you may not know who I am or how I got to Lang, but I think Lang and I needed to meet. I transferred here when I was 24 years old in the fall of 2003. Three months into my new college experience, I was diagnosed with leukemia on December 3, 2003. The doctors told me a year should be taken off. I was in complete remission by May of 2004. I attended Lang again the following year. In the fall of 2005, within two weeks of classes, I relapsed. My grandmother jokingly said to me, “Whenever you attend that school in the city, you get sick again? You think it’s something in the air there?”

My doctor told me I needed a bone marrow transplant and would have to take my graduating semester off. After one month of re-induction chemotherapy this past winter and a brief battle with the flu, I had a bone marrow transplant in April 2006. When August came, I asked my doctors if I could continue my education because I really wanted to graduate. Also, the student loan officers were after me, so I needed to continue with school to avoid them for a few more months. I have taken three online classes this semester and worked with the head of psychology to graduate. I can’t thank Lang enough; the teachers, my advisors and all the people behind the lines who worked with me to allow me to get here.
Eugene Lang’s College Mission has been to foster the highest aims of social justice, political responsibility, and cultural awareness.

USA TODAY had an article in July of this year titled, “ Should Kids Be Left Fortunes or Be Left Out?” The article begins:
Actor and playwright Stephen Lang, 54, remembers when, at 7 or 8 years old, he asked his father to buy him a toy submachine gun.
The request wasn't extravagant. His father, Eugene Lang, was on the way to becoming a multimillionaire as the founder of patenting firm Refac Technology Development. But rather than buy Stephen the toy, Eugene suggested they donate what it would cost to charity. It went to a boys' home in Queens.

This is the man who donated enough money in 1985 to allow us to have this school. Eugene Lang goes on to say, "A good education is to learn to be self-supporting so that they can build their own inheritance," "I never believed in luxuries. I still pick up a penny on the street."
To the parents, friends, family, educators and administration who have helped us get in and through this school, I see it as an honor for all of us to be here tonight and for the graduating class to come from a school that is named Eugene Lang. Lang created I have a Dream Foundation in 1981 and Project Pericles in 2001. Pericles recognized “that every citizen, regardless of economic or social status, had both a duty to serve and the potential to lead, Pericles and his fellow Athenians established what became the foundation of modern democracy. The legacy of Pericles is the core precept of America's founding philosophy and has been historically connected to higher education in the United States. Its mission has embraced the preparation of students for active participation in an expanding, pluralistic society in which citizenship, social responsibility, and community are inseparable.”

I was in group therapy a few months ago and this woman said, “If I were you, I don’t know if I’d even go back to school or care about graduating.” But for me, it is not only about graduating it’s about completing another stepping-stone to continue my life.
Life is unpredictable and that goes for all of us. Addressing a class at Lang is so different than any other college. We are all achieving something tonight that is really special and important in our lives. We should be proud of ourselves and grateful for the people that have helped us get here. And maybe even grateful for the things that have held us back. Because sometimes those things that hold us back, only teach us how much we have inside. As Carl Jung once said, “who looks outside, dreams. Who looks inside, awakens.”

We dream ourselves and we awaken ourselves. And sometimes we sleep through our alarm clocks and dream too much. But that is okay. I believe it is finding a balance to truly be happy with whatever it is you want to do.

As we leave here tonight in this cold weather, I hope you feel a warmth that came from this school. This city can be cold but there are little things around every corner that gives hope. And the New School, well it actually owns quite a few corners now, is an institute of change and awareness.

On a personal note, it is the holiday season and there are many people out there who are fighting for their lives. I hope you will consider donating blood, platelets and even bone marrow. While in the hospital, in a drug- induced daze, I swore to myself if I had the opportunity to speak anywhere, I would make sure I added that. Because I am living proof that transfusions save lives. I have had over 80 transfusions.

I am honored that I was able to speak here tonight and was relieved when Leah called me back and said my speech only had to be 5 to 6 minutes long. Thank you all for allowing me this time to speak.

Once again, congratulations to everyone graduating tonight.

Thank you.

a new year

2006-12-31T12:17:00.000-05:00

hello,
it is december 31st and i am in north carolina. whoa, what a year. this time of year is one of hardest and greatest-i guess somewhat bittersweet. i was diagnosed december 3rd, 2003. then last year, after new year's i knew i was feeling sick again-actually january 1st and on january 9th, i started my reinduction chemotherapy. but this year, i am in north carolina with my family and that is what i have chosen to do. alison is here with me. i chose not to stay in new york and to have it be more quiet this year. or louder, but with my family.
we arrived in NC on christmas eve and will be leaving on january 2nd. the longest i've been away since my transplant. the weather has been really great here. mostly in the 60s.
this year started off with reinduction chemotherapy-then having my birthday at home-then having the flu-then having a stem cell transplant. then the recovery that is still occurring. starting my classes online and working with the head of psychology 5 months post transplant-and finishing my classes in december. i received all a's and was asked to be the speaker at the graduation. to having many of my family members and close friends attend the event -which was really special to me. and then here i am...now i have to start paying student loans. i am post transplant 8 months.
the doctor said that 9-12 months typically starts chronic gvhd, so i have to continue to watch how things are going and to not start any work type things because of the chronic gvhd.
it is so important to have family and friends and believe. regardless of what you believe in, it is amazing to have the support. i know everyone's situation is different and there is life out there for everyone. a stem cell/bone marrow transplant really alters your own life and the ones closest to you. and there are things as a recipient of this care you never forget.
i actually have to go take my pills right now. i love you and thank you so much for being a part of my life.
i will post up my graduation speech later.
have a happy and healthy new year.
love
jennifer

checking in.

2006-12-11T14:33:00.000-05:00

hello,
last week i had a check up on tuesday and my white blood cells have dropped a little bit. this is room for some concern, so on december 19th, i will be going in for more blood work and i will also be getting a test to see if anything is going on. hopefully it will be okay.
i am also in the middle of finishing up school so i can graduate. i have a graduation ceremony on the 18th of december, which is next monday. The school has asked me to be the graduation speaker, so that is an honor. i have sent them a speech-i have to practice. this of course, makes me nervous, but i think it will be great.
i have been feeling tired lately. i think i am just stressed by the blood work results, finishing up school and graduation.
i wanted to write a quick update to let everyone know what is going on.
i hope everyone is doing well.
i will update more later.
love
jenn

happy thanksgiving, holidays.

2006-11-28T22:08:00.000-05:00

hello,
last week i had a stomach flu/virus. it was yukky, but i got through it! so that is a really good thing. Thanksgiving was really nice, filled with food and laughter. I went to Alison's parents' house and it was nice out in the rural part of jersey, all nice and quiet. But for Christmas-it will be crazy and loud in North Carolina with my family.
This weather has been so nice. I went out to a party this weekend. I haven't been to one of those in a year or so -like out late. I should put up some pictures. It was really great to be around some of my good friends, and be socializing. Of course, I am weary of getting sick, but sometimes it is important to get over those things-and try.
I have to do one more project for senior work. and I will hopefully have that done within two weeks.
Well it is 10:15 and I just wanted to update-because I don't think I am updating enough. So after graduation, I still have to watch myself. I am going to start having Alison scanning things in for my personal book-that I am trying to write-and study for the LSAT which is the law school test.
I have a doctor's appointment next Tuesday. Hopefully everything is still okay-and I am really happy for this holiday season. I am so thankful for so many things, but let me tell you, it is so nice not thinking about needing a bone marrow transplant.
It is refreshing.

Love
Jenn

time to recheck, rethink and redo.

2006-11-14T16:51:00.000-05:00

so this week for me has been about a lot of thought-next month is always the dooms day of december 3rd when i was first diagnosed and of course my nurse practitioner's triplets were born on that day. But this week, I have felt different. Maybe it is the holiday season and my passion for wanting to do new things-but i think it also has to do with this feeling of wanting to be a part of something bigger.
Last week, Ed bradley passed away of leukemia. He had a different Leukemia than I have. He had Chronic Leukemia, where I have Acute Leukemia. But regardless of Leukemia, the fear of death, the looming the fight is still the same for many I believe.
I watched 60 minutes and I cried towards the end, when Jimmy Buffett was told by his wife that he better go see his best friend. Just years before, I was taking care of an autistic child, Christopher, and his father, Timothy White had passed away of a sudden heart attack in the Billboard elevators in 2002-and Jimmy Buffett was one of the people that played at his benefit show. But what got me really angry was the lack of education of leukemia. There could have been a segment, at least 5-10 minutes discussing this disease that he died from. But NO. and wouldn't a reporter want that.
PEOPLE DO NOT KNOW much about LEUKEMIA. they hear it, briefly here and there, but it is more than that. Sure the leukemia/lymphoma society has done a lot to raise awareness to the name, but more than that-what is there? Leukemia/lymphoma society, one of the biggest organizations for leukemia patients, only gives a yearly aid to patients of $500.00. That might cover half a bottle of prograf pills if you are in need of a bone marrow/stem cell transplant. Yes, it is important to do research, but it is also important to get funds for things.
So this week started with a call I made to the National Marrod Donor Program. I am so frustrated by people having to PAY to get tested to BECOME A DONOR. Unless of course you go to a PRivately Funded Drive. People do not even know what bone marrow is and if I didn't get this disease most of my friends wouldn't be in the registry that they are in now or family members. BUT still, to get a private test, done very quickly costs $400 out of pocket. The donor program assures you that if you are a match, you don't pay for anything else, because the patient does. Yes, the patient's insurance, hopefully if they have it will pay the tens of thousands of dollars to continue with the testing they need.
Last September, my doctor who I adored sat me down in a room, the day he told me I needed this and told me I need to have insurance or have half a million dollars and have up to $20,000 for at least three months of drugs I would need or he would not be able to do the transplant. I watched my father's eyes tear up. My parents have NO money, how the fuck were we going to do this?
Well my insurance came through-i was poor enough to get other things and I had some amazing people to help me out. i'm still scared by my finances and am trying. But getting people out there to donate is so hard because it is not known. Stem cells and bone marrow transplants are going to continue to save lives and after getting that donor-it is not a walk in the park. It is hard. It still it. IT is scary.
I want more done. I want it known. Yes, it is amazing all that the breast cancer foundation have done. I can't walk into a store without seeing pink products all over, but we need more orange products for leukemia. This disease needs to be known about more and people need to be more educated and there has to be a way to make the funding for getting the preliminary tests done free.
I started to read a book by Erin Zammett and I then started to do more research on her and found out she was the editor of Glamour magazine. And she has a cancer blog. That is amazing. I need a cancer blog somewhere. I was so happy about that. and she also had a website to this amazing website that is like a registry for cancer patients. i wish i knew about it months ago, but i think i will still put it up. Since I am only 6 months out of transplant and the expenses for my life are definitely beyond that money I receive per month.
I want to give some children presents this year that have parents that are going through this. Bone marrow transplants-and any cancer is scary. but i am so sick of hearing people dying of leukemia and NO newscenter going into it more in depth. I think it is appalling.

The costs for this are crazy.

So as for me, I am doing okay. I do not go back to see my doctor until December 5th. I have mad a call into the social worker at Hackensack because I wwanted to know if they had a Cancer paper that i wanted to write in, if I could send something in and then also about giving some things for the holidays.
My counts are doing okay. I have to clean up my living room right now because i have gotten some photos developed and i have them scattered all over the table. I am trying to put together a book to write but it is more of an abstract with my art.
I have one more class to complete for graduation in December.
I am doing something on cancer and leukemia and survivorship-and questioning what was one of the hardest things to deal with and how to get over it.
I am excited to be going to North carolina for xmas. I have to update some of my website soon. and I need to figure out a way to get people to understand leukemia and bone marrow transplants more.
It is so important.

I must go clean. Have a good day.
I saw my aunt's new puppy yesterday. here is a picture. oh and here is a picture of me at the beach a few months ago. and a picture of me and my niece.

a long month

2006-11-01T20:19:00.000-05:00

Wow.
I can't believe I have not written in over a month. things have been crazy with school. I went to NC to visit my family. I also had a bit of a scare where my counts went down, so they did a test to make sure everything was okay.
Luckily, I am still 100% male and there is no sign of any leukemia. I had been sick for a little while, just something like a sinus infection. I have been staying up late doing work. I hope everyone had a really great halloween. I am going to try to update more often. I didn't realize I wasn't writing.

I went to Yoga lastnight. I had not been there the last three weeks because I had been sick and then my counts had gone down so I was scared and then last week, I had lots of work to deal with and was very busy with some things.

I have to go eat dinner now. Finals are this week for three of the classes, so I've been very busy. I was up until 4am lastnight doing work.
Today I did a lot of errands and am also finishing up a mailing I am doing.

I hope everyone is doing well.

Love
jenn

a long month

2006-11-01T20:11:00.000-05:00

updates

2006-09-27T12:50:00.000-04:00

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

2006-09-14T17:44:00.000-04:00

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

...

2006-09-08T10:49:00.000-04:00

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

doctor's appt and surprise bill

2006-08-22T17:55:00.000-04:00

hello
So today i had a doctor's appt and everything went well. I am going to taper off my prograf again and we will see what happens. last time, the gvhd was not at a therapeutic level with the amount of prograf i was getting so they put it up.
but my counts are looking pretty decent. My platelets are still somewhat low-they are at 96,000 today.

So after i got home, I opened my mail. And there was a bill from Hackensack for $19,000.00. I was told during my hospital stay things should be covered 100% however that is not the case adn they were only covered 90%. After negotiation with my insurance, this is the bill right now. My insurance coordinator is helping me out and hopefully I will hear from her soon, but this is somewhat stressful.
I do not even have that much money in the medical fund, so I assume that hopefully this will be taken care of, but if not, I will need to do some kind of a fundraiser.

I rode the bike today for 15 minutes,-which is the most i've done thus far.
It is almost time for dinner.

I think of the money and although it really bothers me and stresses me out-knowing that i am okay-makes it better.

Love
jenn

achy bones from boogie boarding

2006-08-14T11:16:00.000-04:00

so yesterday, i finally went into the ocean-with my boogie board-and geez, does my body feel it today-
last week i had a visit to the cancer center.
i am 100% male and all of my tests have come back negative for any abnormalities.
woohoo.
this weekend, alison and i went to cape may. it was really pretty there and a great weekend, but there were NO waves.-so i was bummed and the water was freezing. So yesterday we left at about 9am and went to Avon by the sea, where there were waves and the water wasn't that bad-and for the first time, since last summer, i got to swim. i was so excited. i mean, swim in the ocean.
i am going to start school again in september, primarily online classes.
Last week was really great, I got to see my niece for the first time, in a long time. I was taking my pills in front of her one evening, and she of course, liked to the purple one-nexium that i take in the morning-
I walked away to get soem water to take my pills and she was on her way upstairs. All of a sudden, this little five year old shouts at me, "YOU BETTER TAKE YOUR PILLS SO YOU DON"T LOSE YOUR HAIR AGAIN".
I just said"okay" to her and started to laugh.
We thought for a long time she thought I lost my hair because of medicine but she thinks these pills are bringing my hair back, so I assume my sister will not have any problem getting her to take her pills.
But we had a great week. She wanted to actually stay with Aunt Jenn for a week. But my sister said "Um, I think she'd be good with you for two days adn then freak out for me..and also, I don't think you realize what you are getting yourself in to."
I retaliated a little bit, thinking I was completely capable of taking care of her, but then I started to think of how tiring it was even for a few days. i mean, from my appointment last tuesday, we went to charlie browns, and then to van saun park, then to my friend's house to go swimming in a pool, then to barbequeing, then driving home. i was done for the day.
But it was really great to see her and play with her. I also spent time with my family, and that was really nice. i got to see my aunts, uncles, cousins...my sister.
One of the hardest things for me has been playing a special part in my niece's life. Children are very important to me and I have spent 3 of her 5 years, very sick. I woke up the first morning after I was diagnosed in 2003-and said to myself, "i need to do this to watch taylor grow up."
I really want to be active in her life. She has had to deal witha lot of change from my illness and she has been so good.
She is one of the best kids I know.
I need to go get my mail, and do some errand type things.
My mom is leaving this coming weekend. I have another appt. on August 22nd. I am going every other week right now. SO that is good. My platelets are still down, but okay.
I am setting up my flickr account to have more sets of pictures. I will post that link, once I get more up. Also, Alison has a flickr acct. with some pictures on it, and I will post her link, once I get it.

Love
jennifer

2006-07-31T20:58:00.000-04:00

this weekend was really nice. i went down the shore with alison-and met my parents there to see my grandparents and aunt. I have not seen my grandparents since before i got sick, so it was really nice to see them.
It was also very hot, so i didn't get to the ocean, which i had wanted to do. but i did get to the boardwalk at night and then to the popcorn zoo on sunday late morning. i have some pictures.

besides the heat this week, i am doing okay. i do not have an appt until next week. alison and i are seeing sleater kinney on wednesday night. It is their last show in New York. Hopefully soon, I will get into someone's pool. I can't believe I have not been swimming this summer yet. Well I can, but I want to go swimming. My sister and niece are coming soon. I am really excited to see Taylor. I haven't seen her in a really long time also. I think the last time I saw her was in October. Oh wait, it was in early February-before I went in for the transplant. My sister asked if she was excited to see me and she said "yes" and then asked if she could come into my building. Aw. because the last time my sister was here in May, Taylor could not come into my apt.
I think we are going to New Hampshire this weekend. I am excited for that. Hopefully it won't be as hot. I am told I am not allowed to walk into the lake but I can swim out -so my friend said he would "plop" me in there from the canoe.
As long as everything stays this way, i am starting school again in September and will hopefully be graduating in December.
I think I will still walk in May in Madison Square Garden because my grandmother has been waiting for this moment for quite a long time. But for now, just focusing on now, things are going okay.
I just wish it wasn't so hot. My body really cannot deal with it now.

will write soon. i'm going to try to write more.
xo
jenn

it's been a lot of days-and more to come, i think day +114.

2006-07-28T14:58:00.000-04:00

after day +100, i stopped counting my days. Alison told me she knows this person that is 5 years out of transplant and still counts his days. For me, now it is just post 100. I am back to dates and what day it is. And I am proud of myself for that because I am a pretty anxious person and I am surprised that I dont' do that. Alison asked if I wanted another 100 day calendar and I said "NO WAY". one time couting 100 days is ENOUGH for me.
I wanted to post the good news. that i am 100% male blood cells-so I am 100% donor.
wooooohoooo.
I do have Chronic GVHD. But it is mild right now. SO I was told I do not have to see the doctor for 2 weeks! The GVHD is at the level the doctor likes right now.
i thought this was funny. i called my nurse practitioner today to see if I could go in the ocean. She said Yes. And then I asked if they had any information on my cytogenics report. This is the molecular structure-and where the leukemia would start. She said they had not had it back. and told me to calm down.
Then she says "however the lab did call yesterday, and asked me if you were a boy and i said yes!" hahaha
My chromosomes are boy chromosomes.
It is amazing someone is saving my life. Like it is truly amazing.
Thank you, donor man, wherever you are.

I am going down the shore to see my grandparents this weekened. I have not seen them for many months, since I got sick.
I bought a new sunblock, I finally found some with clear zinc but it was rather pricey. But I see it as a prescription, something necessary for me.

I need to go eat some lunch.
Much love to you all.
I have amazing support and I know it. And it feels really good. Money can help but it means nothing compared to the love and positive energy I have needed and continue to need.

Thank you.

update-day +107

2006-07-21T23:42:00.000-04:00

yesterday, i had a doctor's appt to see how things were going.
so far my results have shown that my cells are normal and CANCER FREE.
however, it looks like i have developed Chronic GVHD-my doctor had a biopsy taken of my skin and has started me on some creams. my face is so dry. i went to a dermatologist on monday who gave me some medication/topical cream that was really drying my face out. it was so painful to put this stuff on my face, but i thought it would just some getting used to. But when Dr. Donato saw my face on Thursday, she was like "whoa, your face is really dry"
So I have been itchy. Yesterday after my appt, I took this pill an Atarax, that seemed to put me to sleep for hours. I don't like doing that. Hopefully I will have a mild case.
I also cancelled my appt at The Cancer Institute of New Jersey because they have decided I am not ready to go back yet. I have another appt on Tuesday.
Today, I drove my mom to pick up a rental car because on Monday she will start to work at the Community Blood Center. Ironically, my mother worked there for over 20 years. She has got the go ahead to let me be on my own. I am a lil nervous but I have to just take things as steps. She is going to meet me over at the hospital on Tuesday morning.
It is almost midnight. I am going to watch a movie with Alison now.
I hope everyone has a nice and safe weekend.
xo
~jenn

jenna and beissel's party

2006-07-16T22:51:00.000-04:00

Oh yeah, on thursday night, july 13th, jenna and beissel had their birthday party bash-
it turned out to be quite an evening with over 70 people showing up and a good time.
jenna was still in her pajamas the following day at 9pm at night-that is how good it was.
i think there was some point when people were keeping alcohol away from jenna because she was walking around at 2am blowing a whistle.
Thank you everyone for showing up and thank you jenna and beissel for thinking of me.
I wish I could have been there :) next year.
xoxo

it is hot

2006-07-16T22:35:00.000-04:00

hello,
it is sunday evening. alison is watching the espy awards because lance armstrong is hosting. well we are flipping between that and Reno 911. It's funnier than Lance.
Friday was day +100. It was quite intense for me. I had to get up at 630 am. my mom, alison and i went to Hackensack and arrived at the hospital around 8:20 am-I got some blood taken-Then I knew I was waiting for a bone marrow biopsy and hoping to get my hickman out. The bone marrow biopsy was done by my doctor, Dr. Rowley. It was one of the best bone marrow biopsies i have ever had. i think it was my twelfth bone marrow biopsy. They are quite painful but usually the doctor injects lidocaine which numbs the area. Dr. Rowley only needed to do the first part of the bone marrow biopsy. The second part hurts more than the second part because it is when they get a piece of bone and it feels like someone is jackhammering your back. After he finished the biopsy and we talked for a little while, i went back into the room to get more blood drawn and wait for the surgeon to come. I needed to get blood drawn for what is called a chimerism. It will detect the percentage of graft in my body that is my donor's and that is mine. We want it to be 100% donor and 0% me.
While waiting for the surgeon, the social worker also came in. I talked to her for a while. I was jokingly talking about how when I got better I was going to shoot rabbits because of the ATG. When I was in the hospital, the ATG (which is rabbit serum) really disabled me for a few days. So to this response, she was like "oh so from this you are really angry.". I was like "no, i'm joking"...
so i don't know-she wants to see me on tuesday but i am not sure. i need to figure out if i want to see someone from the hospital or go elsewhere that has no relation to the hospital.
So then the surgeon came in and took out my hickman. It sorta hurt because it had been in for a while so she had to pull pretty hard. I was also told that for 2-3 days, I could not get it wet, so no swimming for me.
So by 12 noon-I was exhausted.
I was told that I was allowed to go into the ocean though and that made me happy. but also told that i have to watch out for the sun and should not be at the beach in the very strong parts of the day.
I go back to Hackensack Hospital next week and then after that, I need to make an appt-to go to the Cancer Institute and see my doctor, Dr. Schaar. i haven't seen him in months.
I might be going to the Yankee game tomorrow night, but there are a few factors that are going to play into this.
I am somewhat concerned about the amount of people and I am even more concerned about the heat.
I must go to sleep.
good night.
xo
~jenn

Day +99 - Evening

2006-07-13T22:24:00.000-04:00

First of all, this is Alison..I don't normally write in Jennifer's blog so sorry for the interruption.
I took some photo's of Jenn and the infamous hickman port, aka tubies aka ipod wire looking things aka the evil twins. For those who don't know what a Hickman is, well it's what most patients get when they are getting IV treatments, chemo, blood or platelet tranfusions. It is also used when Jenn goes to her weekly doctor's appointment and gets her counts taken. Every time Jenn wants to shower she has to bust out the clear wrap and make a "window" to keep her dressing covered. It is a pain and hopefully as of tomorrow her port will be removed and she can take normal showers and enjoy a good nights sleep without the fear of pulling that thing. Enjoy the photos...

day +99

2006-07-13T10:08:00.000-04:00

Tomorrow is the big day-well the first step day +100.
Tomorrow morning, i have to be at hackensack at 8:20 in the morning to get some blood work done, to get a bone marrow biopsy and then to also get my hickman out-as aiden berges calls them, tubies. I wish I could take a picture of them but the line starts out of my boob and that seems a lil funny, but maybe i will find a way to take a picture because some people are like "what are you talking about?"
I am a little anxious, this will determine if the donor has taken over -and how much-this is the first bone marrow biopsy i have had since February 27th. or around that date-
I think that may be the longest i have gone without one in a very long time. I was supposed to go to New Hampshire this weekend with Alison and one of my best friends Mark and Pat, but I cancelled because I was not sure if I would be in any pain. Sometimes the bone marrow biopsy hurts me-and just in case something does happen, I do not want to be 5 hours away, and I thought sitting in the car for hours-after that, just did not appeal to me. We hopefully will be going at the end of July.
This week has been a little stressful, thinking about the results, but ativan (anti-anxiety med) is still my friend.
My mother is going to work starting July 24th, so I am going to have to adapt to being alone, which is somewhat scary but is a good thing.
I must go flush my caps one last time today-
On Monday I have a dermatology appt, because my face has been very dry and bumpy-I never had any face/skin issues, but it is something that can happen during the bone marrow transplant. It has become better but I still want to go to a dermatologist. I also have some birthmarks that I want the doctor to take a look at to make sure he does not want to biopsy any or if he does to do that now.
I think I will be going back to my doctor at The Cancer Institute in New Jersey soon, as long as things are okay, and I miss him. I really have enjoyed going to Hackensack but I guess I am very used to The Cancer Institute. I have only had to get a dose of magnesium in the transplant room at Hackensack, luckily but being that the nurses there have only taken my blood, I never really got to know them the way I have become familiar with the nurses at the Cancer Institute.
One time, after I finished my reinduction therapy, I had a panic attack when I entered the Cancer Institute in February. My nurse who knew me pretty well called the Nurse Practitioner and had page, my doctor, Dr. Schaar to see if I could take some ativan. I calmed down eventually-and the nurse came back to me and said "Dr. Schaar has called to see if you are alright and to keep him up to date." and then she said "you know because you're his baby"
And whether or not it was true, it was something that almost made me cry-because doctors don't have that sense of humanity sometimes. And although I'd say it is better than it used to be, I do feel somewhat rushed sometimes with my transplant doctors. My mom says to me "well they have so many patients and you are doing really well"--
So, I hope that whoever reads this thinks of me tomorrow and let's hope that everything is going well inside my body. I will not know my results for probably at least a week.
Soon, I will post some pictures, I have to go do some things to get things together for school in the case I do go back in September.
xo
~jenn

Day +84

2006-06-28T12:12:00.000-04:00

i had indian food lastnight!...the doctor said i could eat take out. and i said i wanted indian, she said that was too spicy for my stomach but i did it. it's all i have wanted...it was pretty good. i was a lil worried but it was delicious. it seemed like some stepping stone.
i had a list of questions last time, on monday when i went:
1. can i travel by plane? yes, but people can have colds and you are in a confined area
2. can i go away like road trips? yes
3. can i go in water and swim? hmm..not yet, let's wait, no public pools, lakes,
4. what about oceans? hmm..not yet, you'e not at day 100 maybe in 6 months, (mom interjects, there are sharks in oceans) I LOVE SHARKS and want to swim with them. -doctor looks at me like i'm crazy.
5. so next summer, i can swim in the ocean? yeah
6. i need to get myself a pool
7. can i have a puppy? um..not really. too much for you right now, adopt an older one (i want a puggle and i will wait..i'm not even allowd in my apt)
8. when can i go back to school? if you continue to do this well, in september.
9. when can i eat take out? you can eat it now. Wait, what do YOU want?
10. when can i go to a restaurant? um, i would wait until day 100
11. when can i go to a party? the doctor's reply was "at parties there are smoke and lots of people and drinking..>" i was like "but i want to go to a party on a roof after day 100" -she said "okay you can go, but no drinking" ..i said "i don't need alcohol, i have ativan". hahaha

so my counts are doing okay-my platelets are still somewhat low at 89-they dropped down. my eosiniphils are high at 6.0.
so this is a sign that they graft is working, with some gvhd. i am still not taking any steroids for it thank god.
i am a monster sometimes without the steroids.
I have to go fill out the form for financial aid now in the case that i do go back to school. i think i will try to take mostly online classes.
erica came over monday night-and ate some dinner with us. then chris came over yesterday. he brought me presents. and this really beautiful card from his mom. he gave me a live recording of the benefit show. of only him. It sounded really great.

This girl that I met through reading a local newspaper Jamie is having a bone marrow transplant, so I am thinking of her and hoping that everything goes well.

This weekend is Alison's birthday and we are going to her parents' because I can't really do much. I wish I could do more but for now, this has to be good enough.

I will write more soon.
love
jenn

from Jenna-July 13th.

2006-06-16T23:10:00.000-04:00

Jenna and Beissel's Birthday Bash!
When: July 13 at 1pm
What: There will be a keg and lots of extra beer on reserve.
Feel free to bring whatever else your heart desires.
We're asking for $5 a cup
Beer Pong Tourney: $2 entry
Poker Tourney: Buy in to be determined day of, winner takes half.
Jell-O Shots: $1
Where: Jenna's Place - 428 Center St. Wallingford, CT 06492
Any Questions call Jenna: 201-310-8410
Why: Do we need an excuse to have a party?
ALL MONEY RAISED GOES TO JENNIFER...DONATIONS WELCOME!

day +67

2006-06-11T14:25:00.000-04:00

today is beautiful outside.
alison and i were up kinda early. well she is was up a lot earlier than i was cleaning the bathroom. then we went to target to get some things we needed, like a new vaccuum for hardwood floors-because according to alison the shark one we had exploded with dust all over the place the other day when i was out. thank god i was out with my mom, that would have stunk for me. we also needed to get a new shower mat and bathroom floor mat.
it was cleaning morning/afternoon-we got the bissel flip it. that is both dry and wet, so of course, i needed to play with this. so after alison dusted the rooms and cleaned them, i went in with my bissell flip it and first used the dry part and then mopped the floors. it was fun at first, and then it was just like cleaning-boring.
but i am not sure if i am supposed to be doing something like that, but i figure i need to tkae some chances now and again, and just be somewhat productive. my mom and alison do so much for me when it comes to cleaning. my mom has to go the laundry mat every week-once a week-because we don't have a washer or dryer in our building and take everything-comforter, sheets, towels, my clothes, and sometimes i throw in alison's clothes because i know it's such a pain in the ass for her to get to the laundry mat. now i have made it so my mom brings them back unfolded and lets me help her fold them because i feel somewhat bad. i went to the laundry mat with her once, bu ti have to sit in there with the mask on and it was just really awful and hot. thank god we have this cart that she brings with her, but still it is a lot for one person to do and she has done it every week. i thought about getting a laundry delivery service but it would be so expensive and we can't really afford that.
after our cleaning, our apt. smells so delicious-and the windows are open, i made a really good salad-with pears, goat cheese, onions, nuts-(i have to cook the onions and nuts-i carmelize them), cucumbers and spring mix that i have to wash very good. and then i put goddess dressing on it. it was yummy. then i had a clementine. i love clementines.
after that alison and i went out to do some errands. she had to go to the bank and then we went to a few stores. we went to this place called good kleen fun-there was this shirt there that is for pregnant ladies, but i bought, well actually alison bought it for me, it had a cigarette, a martini and sushi on it and then it had the not allowed signs crossing them out--that is completely my life now. i don't really smoke and drink anyway, but i miss sushi and take out. she also bought me this new sun block california baby, and i also got another one in target today. my skin is so sensitive to the sunblock that i think it is making my face break out, so we are trying a few different ones. i guess we can never have enough sunblock. then after that store we went to a store called "down to earth", which had amazing clothese in it, but a tshirt was $80, i had my mask on and i think sometimes i forget that people can hear me just fine and i said to alison "this store isn't very down to earth"..haha. we left that store-then we went by footlocker and another shoe store. i need new walking sneakers and alison has been looking for new shoes too but i didn't really see anything. then alison went to get a pedicure and i came home, here.
i think tonight, i am going to make a turkey with cranberry apple stuffing for dinner with some butternut squash and corn on the cob. i had to go to the dentist because i cracked my tooth in my sleep the other night in northvale, nj. my dentist is amazing, he has not charged me a cent. i told him i was going to make him go poor-he told me he already has a wife and kids. :)
but afterwards, we stopped in westwood, nj at the trader joe's and got some things and lots of frozen things which are good for me because sometimes i am just really picky with eating, so usually alison and my mom will then tell me to figure it out on my own.
i have slowly watched them tell me "no" more lately and as much as this should be fine, it really pisses me off.
my hair is starting to grow back. two weeks ago, i had one of those issues where i got out of the shower and started crying to alison that my hair was never growing back and my platelets were going down. i was just having a moment of hopelessness-and then boom, it all of a sudden just happens.
so tomorrow is a doctor's appt.
i can't wait to get to day 100.
i really miss barbeques.
i hope everyone is doing well.
oh yeah, yesterday, alison and i went to pearl paint because i wanted to start drawing again.
i just sat at teh desk and drew for hours-and made silly pictures-it felt good.
xoxo

update

2006-06-10T10:16:00.000-04:00

hello,
so this week has been pretty good. i had a doctors appt on tuesday-my counts are doing "okay". my hemoglobin and white blood cells are in normal range, however my platelets are low. not low for transfusions yet, but hopefully they will come back on their own. once again, dr. rowley talked about this possibly being the GVHD that I am having. He noticed my face was red, my skin was red which I don't see nor does anyone else, but he knows what to look for. If it stays the way it is I will not have to be medicated. He said it coudl go away on its own. He also put me on a beta blocker because my heart rate is sorta fast. it is a lot mroe fast when i am there and i tried to tell him that but he still put me on the beta blocker.
at night when i was home i took it and it drastically decreased my heart rate and my blood pressure but in my opinion it was going too low. my heart rate was 62 beats per minute and my blood pressure was around 100 or 90/50. i called the next day and asked to decrease the dosage because I felt that this was too drastic of a decline. so they cut my dosage in half.
I have been vomiting a little bit this week again, which hasn't haappened in a while. I do not know if it is the new medication or GVHD. It has been nothing extreme, only 2 times, for one day, but nausea is back a little more.
It is saturday morning and i have to get myself together. i like to go out earlier when less people are out. i have to go eat breakfast and take my 12 pills for the morning. my magnesium was low this time so now i am taking 8 magnesium pills a day.
i am really missing indian food. i can't wait until i can even get take out from our fav. lil indian restaurant in hoboken.
well since i am slow at getting ready and i need to be ready in 40 minutes i should get going. i will write more later

love

Help someone out who is still in search of a Bone Marrow Donor

2006-06-04T00:55:00.000-04:00

Doria Roberts (a musician) posted this tonight and I thought it was really great. I had actually read about this girl a few months ago when I was in the midst of my chemo and I was hoping she would find a donor. Unfortunately, she has not. I know in Bergenfield, NJ, there is a massive amount of philipinos. I can set up a drive and help out but there is no way I can be present right now. I am not allowed to be around big groups of people. I know I have asked a lot of people recently for things and favors and everyone has been really awesome. But this is something that is really important to me. I believe that everyone that is capable of a BMT should be able to find a match. This is exactly the way Nelly's sister passed away. WAITING FOR A DONOR.
Let me just tell you this situation real quick. This girl is in CA, who is 33 years old who is looking for a bone marrow donor. she is philipino. So most likely her donor will need to be at least half philipino. She has been looking for a donor since December-and there has been no luck. I really would encourage anyone to go out there and donate but I think setting up a drive and trying to somehow get this knowledge to Bergenfield, is what I will try to do. I am not sure if someone has already done this but I think it is the best I can do for someone else right now. If anyone has any ideas, please let me know. I am going to start working on this on Monday.

Here is what Doria Roberts wrote today:
Bone Marrow Donors of Color needed (repost - sort of)
Body: Doria here. I'm running late for soundcheck but something was brought to my attention and I wanted to post this before I left. Please forgive all typos...

A friend of mine, Sara Weaver, died in 2002 from complications associated with her bone marrow transplant which she needed when diagnosed with Leukemia. She was 32. The anniversary of her passing is tomorrow I believe.

One of her final wishes was to encourage people of color to donate bone marrow b/c there are so few in the registry.

A bulletin was sent out today about a Filipino woman who needs bone marrow as well. The donor has to be of Filipino descent and there are few options available to her.

This is the fourth young person I've heard about who needs bone marrow and it's troubling.

No one likes to think of their own mortality but just take a moment and imagine if this were you and you had to rely on strangers to save your life. How desperate and alone you might feel. How surreal and precious everyday would seem.

We repost so many things here and I think this one is worthy of everyone's time. You never know, it might work. She might get what she needs.

So please send this message out in your own words, with your own thoughts. However small. Just sending some luck her way might help.

You can find her story here: http://www.myspace.com/bonemarrowdonor

You can find my friend Sara's story here: http://www.goswisher.com

Read Sara's journal, read her guest book, make a donation to the fund if you can. Stay awhile. She was amazing and funny and talented and brave. You probably didn't know her but you will most definitely fall in love with her after reading her words.

This is a reminder to appreciate what you have and to not worry about what you don't have. Even if it's just for a moment...

Peace,
dr

happy memorial day

2006-05-30T20:54:00.000-04:00

the night before my doctor's visits, i usually have these awful dreams about my counts going down.
but fortunately, everything is looking okay. my counts are all pretty good.
my doctor's appt. was pretty quick today, and the only decision made was that next week, they would take out my hickman-that is the catheter i have in with two lines that allows for the nurses to take blood, administer transfusions, iv medications and anything else. i am sorta not in accordance but my one doctor said that i haven't been using it for more than 5 weeks than just getting my blood tested and since it is draining a little bit, it would be better to get it taken out.
the tinglies, i am still hving, she thinks could be mini-gvhd. she said as long as it stays this way, i will not need to go on steroids.
she also told me to stay completely out of the sun because of my skin and it may increase the GVHD and that i should just go oout for walks during the night. it is so hot out right now that i don't mind staying in the air conditioned apartment.
i'm tired today. i had to get up early for my doctor's appt. i will write more soon.
xo
jenn

halfway there

2006-05-25T15:23:00.000-04:00

today is day +50!!!
in celebration of this, when i was walking down the stairs to get my mail. i thought i should be thankful for this. for day +50, so i decided that i needed to have a turkey dinner like thanksgiving. my mom asked what i wanted to for dinner, and i said "a turkey dinner, gobble gobble" -and she was like "how come you couldn't think of this yesterday when we were out with the car?". and i explained the thought process and then she thought it was cute-and i am going to have a delicious turkey dinner. my best friend jenna is coming over today from CT. she tries to come here once a week. a lil crazy but she does it. it's really amazing. also erica might come by, but i am not sure.
i just rode the bike. I have been having these tinglies that go all over my body and they are very hard to deal with. they started immediately when i was riding-i ride indoors on alison's bike but we have a trainer hooked up to it. I first thought I would be dealing with more of this in the winter so we thought it would be good but it's really good still because i can't really go out yet to do things like that. But these tinglies are really hard, so i made myself ride for only 5 minutes. But it's a start. I also tried to lift little weights today. I have been eating ice cream lately-like an ice cream monster.
I have started taking Flinstones vitamins. I asked the doctor if these tinglies could have something to do with lack of B12 and he didn't think so but told me to take osmething like flinstones with no iron. It is my fav. pill to take.
So it's memorial day weekend and we are just hanging out. I feel the hardness of this sometimes especially on the weekends. I am a very let's get up and go away type of person and i just can't do it now. it's hard.
and we're really in search of a new apt. now. and that is sorta hard. but kind exciting.
but today is day +50 and when i first made this little chart-thinking of getting to day +50 seemed sooo far away-and it kinda has been-and 50 more is like OH gosh-and it isn't even the end. it's really a whole 6 months or year. but i still think "this is only temporary".
i really want to take a lot of my cds and put them on my itunes list and then put them on my ipod.
that is my next job.
I got a file cabinet yesterday-so that was the job for yesterday or two days ago actually-yesterday my mom and i did a lot. i went to the apple store because my adapter was messed up. then we went to gymboree-the kids store and got my niece a lil outfit for her bday. then we came home and i went to the laundry mat with my mom-to do laundry-but towards the end, i got really antsy and hot with the mask on and ended up vomiting a little bit.
i have so many hospital/insurance papers. it's too many for a 27 year old.
okay, i need to go.
love
jenn

monday's dr. appt

2006-05-22T20:49:00.000-04:00

so for now, i am going to the doctor every monday or every week. next week will be tuesday bc of memorial day.
i had this awful dream lastnight that my counts went down real low. my wbc was at .84, my hemoglobin was 7.3 and my platelets were really really low, and outside of my hospital room instead of a nurse's station was bar. oh so i had a nurse that was injecting this stuff called neupogen-which stimulates the bone marrow to increase counts, usually the white count first, but she gave me five injections. and she kept injecting me in the face. and i kept saying to this nurse "you know my arm or leg is fine" and she was like "no" and i had all these welts on my face-so weird, because i have not had to use neupogen. but then i said to the nurse, "am i getting any transfusions?" (because my counts were so low) and she just said "no the doctor has ordered you drink a guinness"...so i woke up today, terrified that i was in for some low counts. i think it was this antihistamine med that i am taking sometimes for these tingly nerve feelings i get through my body. But it was kinda funny.
My counts are doing okay. My wbc went down a little bit to 4.4 but still good. My hemoglobin was 11.8 which is fine and my platelets went down a little more to 106. The doctor thought last week, i was possibly showing signs of GVHD but this week has ruled that out. He doesn'jt believe i am showing symptoms of that. Today is day +47, almost halfway there.
The doctor told me about how long I would be on most of my medications. I get off the antifungal-my diflucan-in about a month. Then after 6 months, I can stop the prograf and probably the high blood pressure medication and folic acid. For a year, I will be taking antibiotics. I take penicillin, acyclovir, bactrim. The other medication that I am stopping today is a birth control pill. I also take 266 milligrams of magnesium and protein 3 x a day and that will probably stop or lessen when I get off the prograf.

The only other thing that we look for is the GVHD and well the CMV. BUT if i get GVHD, I will most likely go on steroids. If i get Acute which happens in the first 100 days, I Will be on massive doses of steroids, approx 160 mg a day-for a while.

My mother just almost made me cry-but i held it in. She said that watching me go through the ATG-the rabbit crap that really made me sick before my bone marrow transplant was harder than childbirth.

saturday morning

2006-05-20T10:54:00.000-04:00

my brother, sister and niece are leaving to go back to NC today. I wish i could see them before they go but i don't know if that is possible. I have been sort of bummed because they came in tuesday but I have only seen my sister once very quickly on Tuesday. And I was on that antihistamine that was just leaving me on the couch. My brother stayed here and we attempted to play scrabble. I was allowed to see my niece from the doctor and nurse, but then when she got here she had a runny nose, so we decided that it would be better for me not to see her.
On wednesday was the silent auction. Taylor, my niece, went up to Alison. She tapped her on the shoulder and said, "is jenn here?" and alison told her "no she is at home." and then taylor responded "but this is her birthday party". aww.
someone must have told her it was a party for me. I do not know what she think or understands. I know the last time I saw her she was scared of me with no hair to some degree so I have chosen to not see wearing a mask. And knowing that she has a cold, I have decided to stay away from it.
My sister then started to feel kinda sick-not sure if she had cold or allergies on Wednesday/THursday, so I have not seen her again. My brother came over lastnight with my dad and my brother and i played the longest game of scrabble as my parents waited so we would play cards with them.
I wish my brother and sister were closer sometimes because they are amazing with me and I know they want to be here more with me. And I enjoy them. it is familiar. It is hard too because they stay in Norwood when they come which is about 45 minutes to an hour away. At least my mother has got to spend some time with Taylor. I am really happy they were here for the auction. I had made a video and i really wanted my family to be there for it.
My dad started to talk about the video the other night, saying it was so great, and he started to cry. I kinda cry when I watch it.
I have to make some copies. I was proud of myself. It was my first project I did on my computer post-transplant. I worked on a lot of it in the hospital, when I wasn't dizzy from all the meds.
I am still nauseaus sometimes. But overall, it's going really well. Alison and I were talking about my dreams today. And its been really weird because I feel like to thnk of dreams just hasn't happened. And it isn't like a sad thing, it's been about just fighting this thing and winning and to keep moving on day by day. I can't wait until I can get a puppy or go away on a vacation or finish my last ten credits. And have my grandma sit in Madison Square Garden for my graduation. i have taken this crazy path of college. I have taken classes from community college to harvard. And there is everything in between. I have met amazing people and had the opportunity to go to some really amazing places taking care of an autistic boy and his twin brother who wasn't autistic. Judy, their mother, ,helped out with so many donations that did pretty well. She wrote to James Taylor who donated things and Sting. I have sat backstage in John Mellencamp's room, just places I never thought I would be. I have had leukemia before and had to take a year off of school. I have had all these stops and bumps and places that brought me and helped me and taught me things. I just like to see where things take me. But I will graduate from college. My grandmother always says "I want to see you graduate before I die." My uncle and I were joking around one time, morbidly, and said "i might be the only thing keeping her alive"
i guess i mostly dream of having a backyard to just go and read a book in or something.
Right now, Alison and I are talking about where we should move to next. OUr lease is up in August and our place right now is a little too noisy. We need more quiet and also a little more room. We thought of the suburbs. We are trying to figure out how to do this because Alison goes into Times Square monday-friday, so it is just trying to see what is out there and whate we can afford. In hoboken, we have so many expenses. There is also the concern of my money situation and my recovery time. We have a car that we have in the garage-and then the insurance-the rent-it's all very pricey here-
I just think it will all be okay.
Alison is cleaning our bedroom and she made me make breakfast today. I tried to tell her "i'm sick" and she wouldn't take that. mornings are still my roughest period with nausea.
well i have to go shower and get dressed-and call my family to see if i will see them or say goodby on the phone.
i will post some pictures of the auction when i get them.

day +43

2006-05-18T17:57:00.000-04:00

lastnight was the silent auction-and it was a blast from what i hear-thank you everyone for attending and helping out.
it is really sweet and overwhelming to see the outpouring of support. alison worked so hard on everything and from the pictures it was set up so beautifully-the way i envisioned it.
i was part of the pre-planning and i have tried to do as much as i can to have the night be the way i would like it and to have people have a good time. i know i wanted it to be a nice place-and for it to be something that made people feel special for being there. i think that was accomplished. SO many people came from all over and we got rid of almost everything there. my uncle ed bid on this amazing guitar there and gave it to alison at the end of the night. it was such an amazing gesture. I was so happy because i knew she wanted it so badly.
I have been having these tingly things through my body-i know it's a hard way to describe something but it feels like pins and needles or something closely related that starts in my back and goes throughout my body-at times. the doctor said it could be a little GVHD which could be good, but it really is irritating. He gave me this antihistamine to take when I need it and it really knocks me out. Two days ago, I think I slept most of the day.
At the clinic on Monday, my counts were still doing pretty well. My platelets have dropped a little bit to 111 which makes my doctor wonder what is going on with GVHD, but my wbc is 5.6 and my hemoglobin was 12.? I am still not allowed to do much-and the mask is my only form of a puppy right now, but it is still just weekly visits. I have been CMV - still which is a good thing.
I feel tired sometimes still and I mistake hunger for nausea-vice versa.
Overall, things are going okay-and we are ALMOST AT THE HALFWAY MARK day +50!
oh 50 more days-it just seems so long-each day can be long-sometimes

i have to figure out dinner.
i will write more later

day +34

2006-05-09T19:58:00.000-04:00

so i say i will write more and i seem to be slacking
things are going okay.
i am now on day +34 and that means that i am looking for GVHD. The doctor said that acute GVHD will usually show up from day 30 - day 70. There were some things that he said might be showing that I am starting to get it, but he wasn't completely convinced. Yesterday, my counts were doing okay-my wbc and hemoglobin are pretty good but platelets dropped a little bit. He said this is a possible sign.
Lastnight and this morning I felt really nauseaus. i vomited all my eggs today. They were delicious, but my stomach was not happy. I woke up this morning at 630 and could not fall back asleep. i had back stomach pains/cramps. The mornings are usually pretty rough on my stomach.
I worked on some Silent auction things. I am trying to work on PR to make sure we have enough people to come. I really have been a part of this, although sick and watched Alison and many others work to help this thing. And we've got some amazing donations. Today I made up a one sheet that will be there in case people don't know me.
I also got the suburbanite to write another article. Howard, the writer, has been so amazing with helping me out. i also contacted the Bergen Record but Deena Yellin, the norwood person in charge. She said she would put a small article in. She has been really nice in putting things in, but sometimes I wish it seemed more important to her. I know that may sound selfish but I want people to know about bone marrow. I am a 27 year old fighting for my life and although not everyone needs to know the intensity of this-I know that so much can be done. The Record reaches so many people and having articles in there really gets people. I wish she would do a little more for me.
So my mom have been p.aying this game spite and malice that Jenna introduced me to. I have been taking it kinda easy. I am sorta ehh but doing okay.
today we got another guitar signed by ben harper but we might auction that on ebay. Thank you Kristen. She has been working her ass off on getting us donations.
tomorrow mom and i are going to watch the shining. i will really try to write more.
thanks to everyone who is going to the auction.
i am watching american idol. i feel like i watch so much tv.
david blaine lastnight was crazy.
i feel like i relate to him. my liver enzymes are up. my skin is peeling-and occassionally my arms and feet are tingly.

day +24

2006-04-29T09:53:00.000-04:00

hello
i can't' believe it has been so long since i've written.
so i've been going to the doctor on a reg. basis, about 2-3 times a week.
ii went on thursday and my counts have continued to increase. SO no transfusions for now.
I have a really painful shoulder/neck, on my right side-so i needed to get an ultra sound to make sure i did not have a clot. and thankfully i didn't or they would have to take out my port. i have this port with two lines coming out of a main artery to get blood and to also infuse. Since, I don't have many good veins, i was happy to know that i did not need it taken out and be poked every week or twice a week.
i have been getting these bumps on my fingers-only the inside by the palms. i keep getting more so i went to the doctor yesterday, on friday to show her, and she said "this is something that shows up more in Chronic GVHD, but it can't be that because you are not passed day +100". she gave me some cream to put on my hands. I don't know if i should call when I notice anything different, even the littlest thing or it is okay for some things.
I usually call right away.
my prograf (a medication that helps against gvhd) has been lowered again because my blood levels were still high.
BUt all in all, still doing pretty well. I am fearful of GVHD, but know it will be a good thing, although scary.

other than that, i have been focusing on the silent auction on may 17th. although i am not able to attend, i am trying to make a video for it and i am also just trying to put things together. I handle most of my finances and saw today an Explanation of Benefits from Aetna that showed Robert Wood Johnson may bill me about $10,000. We will see what happens with that. In some ways, I am relieved because when this was first showing up online Robert wood was trying to get 400,000 for my stay there during my Reinduction Chemo, but the negotiated rate was 96,000. So that was better, but still very expensive. I have not received the bill from Robert Wood Johnson, but we'll see.

My mom has been making me dinner almost every night but on Thursday night, my best friend Jenna came over. I decided I was going to cook-mexican theme. I made guacamole, chicken and steak fajitas, corn on the cob, beans with rice...i had never made mexican before. it turned out delicious.

My dad installed our air conditioner this week. That was a two day situation because it is massive and my apartment building does not have a level ledge so he had to pick up some more equipment. He also went to pick it up and they would not let him so the store had to deliver it here. He's been running around a lot for me lately and been getting some really great things for the silent auction.

Alison is making me breakfast right now and I have to go take my pills soon. I just could not believe I had not written in so long.

I stayed up really late lastnight. i got into this marathon on top chef on Bravo-and i was really into it.

I've been hanging out with friends...
oh yeah, tshirts are here-if you'd like to buy one for $15.00
let me know.
you can see them on the website.
http://www.jfmedicalfund.org

i will try to write more and consistently when i am doing well...

love
jenn

i am home!

2006-04-20T21:17:00.000-04:00

today is day +15.
i was able to go home because my wbc is 1.0.
and i am doing really well. i mean, there are a few complications with liver enzymes but hopefully that will be figured out.
today, i had two people visit me that were really amazing. the little boy aiden that i follow who got a bone marrow transplant in the middle of february, his parents came by before i was leaving. they gave me this adorable picture of aiden and then a very generous contribution. i was overwhelmed, and i cannot say thank you enough.
today was a really beautiful day out but i am really overwhelmed.
it was nice to be home but hoboken is loud. and from going to a room where you could not hear anything to the noise of all the people is quite a change and living on the third floor.
i go to the clinic tomorrow morning at 8:30am.
i was really excited when alison walked through the door today from work. i know that she felt "jenn's home" because i had stuff all over the place.
my mom made a home cooked meal and i ate way too much-so i am a stuffed cat like garfield.
i am trying to learn my medications and it is quite complicated. just timing and all the different ones.
the hardest part for me right now is my energy level. i keep thinking of all these things i have to do but it just seems so difficult to get off the couch or something.
i am excited to lay in my own bed tonight.
hopefully i will fall asleep.
it feels good to be home.
i still have a lot of days until day +100. july 14th --but right now it is more one day at a time.
we have to buy an air conditioner and an air purifier. and to find some noise reduction.
thank you everybody.
alison has been working really hard on the silent auction. things are coming together really nicely. hopefully we will have a good turn out.
good night for now.
xo

day+8

2006-04-14T00:33:00.000-04:00

so it is day plus 8 and this is the critical time-well starting day 5-whenever i start to engraft-
so far, i havenot had any bad mouth sores-and i am doing really well for what i am doing through.
it sometimes feels funny saying "i'm doing good" because of the vomiting and the tiredness, but in general, my doctor told me it looks like i will survive through this part-quite a tact-but he made me laugh
we had been having some issues with my blood levels and prograf. my blood levels were too high but they had to lessen my dose by about half. so now it's better.
i've been getting transfusions-thank you for donating. i think i still need more platelet transfusions if you'd like to come and donate.
i know people are getting sick and stuff now.
i drew a bunny with an ATG necklace on hm-that i will put up and throw things at when i am mad. the ATG, this rabbit blood that i got-or serum really was awful for me. it was the worst so far. as far as experiences go here...but sunday is easter, so saturday night i'm dying easter eggs..yes!
the food is okay. i am not typically in the mood to eat but i try to eat every meal in another way to avoid mucusitis. i have not had any fevers besides a few at the beginning but everything has come back negative.
let's jsut hope things stay this way for a a little bit longer.
the doctor said that if things just keep going according to plan, i will look at getting out of here next week.
hackensack has been really great. the nursing staff and doctors are realy good..and i trust them. i did ask for platelets today though because i found them necessary.
my mom has been here all week.
thank god for her.
my best friend jenna is coming tonight really late and will be here for a few hours tomorrow.
oh yeah
May 17th, we are having a silent auction at the colonial inn in norwood, nj.
we are having invitations made so if you know anyone that would be interested in getting an invitation, please email me with the address.
there is an RSVP by may 10th and a charge of $30 to get in for the food and charge of the place.
it should be a really great evening.
we have some pretty good things to auction.
there is more info on my website.

i think i'm going to take a sleeping pill and try to get to bed.
i hope everything is good and everyone is doing well.
i am checking my email a lil more now. at first i really wasn't dealing with much
each day is its own and there are days, i might do many things and some days i just don't feel like being on the phone or any technology.

but i enjoy the emails and if i don't get back right away, i will get back as soon as i can
love
jenn

day+4

2006-04-09T16:31:00.000-04:00

Today is day +4 and I am sitting up and I actually did a rough draft of a lil surprise video I am making for the silent auction since I can’t be there.
WOW. This is rough, but manageable. My brain is mostly mushy from chemo and drugs, so I find myself backspacing and needing to slow down. I’m beginning to realize that it is okay to be in bed sometimes.
I mean, most of the time. I am an avid user of ativan for my nauseau. Today, I was drugged for my platelet transfusion so I slept a lot of the morning. Actually I am sleeping a lot. This morning. I tried to do some bill stuff or esterday morning. See I can’t remember. I am still trying to eat things. I know that Alison is taking pictures and helping me with my blog because I am a lil whacky right now.
Sometimes the steroids really get to me. I called my mom to inform, I had asked her to buy me 8 batteries, last week. 4AA and 4AAA, istead she goes to Costco and buys 36 AA which I just figured out when I needed the AAA so I called her to yell at her for that and then demand a receipt. It is funny when I look back. Then I needed a form that my dad took. And I called him up to yell at him to never take things out of my room unless I know he is. Ahahahah. Meanwhile, he is at a real estate open house, and barely gets steroids anyway, so probably thinks I’m being a real brat. AWW..my poor poor mind, I want it back.
All the meds and liquids they have me on. Really do a toll on you. On me.
The silent auction is coming together nicely. I assume more on that this week. I sorta quit after ATG-that rabbit stuff really messed with me. I hate RABBITs. Of course, it’s easter..
It looked like I had got lost in the ocean my eyes were so red. I was so sick…I even said to my mom “are you nervous” and she said “yes”..and then I got mad about that…hahaha
But only bc I am scared.
The next week and half will be really hard.
Well definitely more than that, but I know I have to focus, on little steps.
I got a gift tower basket -from the processing dept. thank you-I don’t know who that is.
I love presents☺
I really can’t get too technical right now. My brain isn’t there-like with all the specicifics of things-but I just wanted to write because I felt that I could and that is a major accomplishment for me right now…
I will hopefully write soon
Love
jenn

Day 1 is here..

2006-04-06T21:16:00.001-04:00

So last night was Jennifer's BMT and the day was very long. Jenn was nervous, anxious, and scared. She took her medicines, ate a little lunch, and mostly kept to herself. Her best friends Jenna and Erica were there along with her mother, father, and I. Of course there were many laughs during the day and I know Jenn was happy everyone was there. We thought the transplant would be around 4 or 5pm, but it all happened at 7:45pm. Her doctor brought in the bag of cells and it looked like a normal blood transfusion. Everyone was very quiet and it was a very surreal moment and I'm sure a million thoughts were going through everyones minds. The entire transfusion lasted about 2 hours and Jenn slept a little bit through it since she was heavily medicated in case she had an allergic reaction. Thankfully she didn't. After she was transfused her nurse gave her medicine to make her use the bathroom since she has been full of liquids. It is healthy to flush the system out and not have any trouble with her lungs so this meant an all night party in room 8907. Well, no but Jenn was up most of the night in a lot of pain and having to use the bathroom every 10 minutes or so for a few hours. It was hard for her to walk and her knees and back hurt her. She managed to snooze on and off but was woken up again for vitals and morning medicine by her day nurse.

The day was slow and Jennifer was in a lot of pain. It is mostly from the effects of chemo and the transplant. Sore joints, feeling nauseous and getting sick a lot. She was exhausted from not getting any sleep but I could tell she was frustrated. The pictures below are a bit fuzzy, but I didn't want to use the flash on some of them since Jenn was feeling sick. The photos show the BMT, a photo of Jenna, Erica, and Jenn's father in the background. Another photo is Jenn and I snoozing away, and more BMT snapshots.

It was an incredible experience and although the next few weeks will be rough and perhaps a little scary, I have a lot of hope and love for Jennifer. She is just so brave and incredible.

Day 0

2006-04-05T08:30:00.000-04:00

Today is considered Day 0 for Jenn..
She will receive her BMT sometime in the afternoon I believe. Then it is time to count to +100 days. I'm a little nervous, but mostly just excited I think. I'm not sure how they are doing the procedure, but I'm assuming it will be through her IV tubes. She has been so sick the past few days because of all the medicines and side effects. I have been talking to alot of people through the Leukemia newsgroups I belong to and they say all this is common and it just blows my mind how someone could go through this. She is just a very strong and determined person.

I was very happy when my phone yesterday and it was her calling to see how I am doing and she was telling me she missed me. We talked for about 2 minutes but it felt so good to hear her voice. She didn't get out of bed all day on Monday and to hear that she is at least walking to the bathroom is huge. It's been hard for her to talk on the phone so those who have been leaving messages please don't take it personal..believe me..she loves you all :)

Okay, it is time I get myself together and go over to the hospital around noon. I usually wait till we get our mail because Jenn just loves to get mail even though lately it is hospital bills and insurance junkage galore.

Until Thursday..
Thank you for reading..

PS - I hope you have been checking out Jenn's website and the details for the silent auction/dinner event in May, please read: http://www.jfmedicalfund.org

Float On..

2006-04-02T16:55:00.000-04:00

It's Sunday evening and I am back from the hospital. I drove there Friday night to spend the weekend with Jenn in her cozy studio..eh hospital room. Friday night was nice and sorta calming. Jenn took her bucket o' pills, received her chemo treatment and showed me her brand new computer which of course I fell in love with. Friday night was sorta busy but we managed to eat dinner and Jenn fell asleep fairly early but was up throughout the night having to run back and forth to the bathroom and get vitals taken.

Saturday morning she was up at 6am which sorta shocked me. I was exhausted from my week and realized how I needed to get in hospital/caretaker mode..fast. Jenn went into the exercise room while I slept for another 30 minutes. She biked about 3 miles and then walked about half a mile around the floor. Somehow she has come up with the equation that 22 laps around the floor equals a mile and she did half that..no clue, but I will just let her have that one.

Late morning her folks came by and her dad & I drove out to Norwood to see the Colonial Inn, which is where we are having the silent auction and dinner on May 17th(mark yr calendar). We arranged some final details and wrote up a little dinner menu which I'm not sure I am thrilled with yet. I think I need to make some calls this week for that. Afterwards he took me out for lunch at this great Greek joint Jenn has told me about a million times but we never had the chance to go. We moved onto some shops in Norwood, bought Jenn her Gatorade, and then headed back to the hospital. Erica was there and I was happy to see her and as always enjoyed listening to stories about her job at the cafe. Eventually Jenn's parents left and then Erica headed back to the city. Jenn was sorta napping from some of the meds she was taking. She was getting nervous about the heavy amount of steroids she was going to be getting at 10:30pm. There are so many medications that she has been taking to prepare for this transplant, I am still amazed how wonderful she has been doing. This is my inspiration.

So finally it was time to take the pills and although Jenn was a bit nervous she popped them in her mouth and commented on how they tasted like shit, haha. She was already very tired and after she took the pills, I just put on some TV and rubbed her legs till she passed out. I was sorta waiting for her to get up and maybe have some type of emotional reaction but she slept for about an hour and then had to use the bathroom. I managed to fall asleep but would wake up when I heard her which was maybe once an hour or so. They have also begun the process of hydrating her and trying to flush out her system a lot even though she had a few chemo treatments left.

Sunday-Sunday-Sunday. Jenn slept in later than usual and I woke up thinking it was 10am but it was a little after 7am. The clocks were moved fwd an hour, but for some reason I felt as if I had gotten a lot of rest, ehh. Being in a hospital room makes you forget about time, very quickly. Jenn woke up a little later, and we went for a morning walk around the floor and then we had some breakfast and went over the details for the invites that I need to design and print up sometime this week *sigh*. There is so much to do with the May event, but I feel like we have made so much progress from 2 weeks ago. I am hoping Jenn stays well enough to continue her amazing tactics with this event, but I know the days will get harder and she will be sleeping and feeling crappy a lot.

Today she was finishing up her final chemo treatments, getting more steroids, anti-nausea, anti-fungal and viral meds, and probably another bucket of pills that she will be taking. She took a pill called Decadron and then she will also take something called ATG and this medication modifies your immune system. It's mixture of antibodies that recognizes key receptors on T-cells (part of the immune system, which are responsible for attacking and rejecting foreign substances within the body) ATG destroys these T-cells and decreases the risk of rejection. Whooosh, so much to remember. This is sorta scary because it can cause strange feverish side effects, but as usual we are all hoping that Jenn continues onward. They give a lot of these meds at night when patients are just about to go to sleep.

Saying good-bye to Jenn is never easy, but I know she is being taken care of and on her way towards this transplant in a few days. She is being so positive and taking such good care of herself. She is walking and trying to keep her strength. She told me today that her doctor said that exercising the legs and mind are the most important things to be doing. She is trying to eat 3 solid meals a day and last night she woke up and nibbled on a Kit-Kat at like 3am.

Please keep reading, thank you.

Love,
Alison

PS - below are some pics - Jenn having chemo and chatting on the phone, the views from her room, and there is a blood drive tomorrow in her hometown in norwood, nj.

from alison..

2006-03-30T21:08:00.000-05:00

so i have logged into jennifer's blog mostly to talk about what has been going on..
jenn hasn't had internet access yet and hopefully after this weekend she will be able to get it hooked up. she finally got her old computer fixed but ALSO received a brand new laptop and i can't wait to see it. hooray for new computers, she deserves it.

yesterday was the first day and it was a long one.
jenn had surgery to have a hickman catheter put into her chest so she can receive IV fluids, chemo treatments, and other cocktails they give to her. after she recovered her mom and i met her in her room and although it's smaller than her other hospital, it is very nice and cozy. i helped unpack her clothes, photos, and attempted to hook up the xbox her cousin let her borrow. she has a nice flat screen tv with a lot of channels so i'm sure that makes her happy. after settling in, one of the nurses came in and gave jenn a cup full of pills and that was only the begining. i have no clue how many pills she took yesterday but it was a lot. she started to take steroids and many other meds to prevent the bad affects of chemo. although she was a little anxious and nervous she did an amazing job at getting herself situated in the room. they took blood and gave her more pills in the evening before starting her first dose of chemo. the view in her room is really great. she can see a lot of nj and the entire nyc skyline. she can even see one of the local airports and there are planes and helicopters flying around all the time. i am really happy that she had windows because her last hospital there was only one small window and it didn't have much of a view. i am also really excited that there is more hallway space for her to walk around. it's very important she walks and exercises her legs when she is able to. the nurses and doctor's seem really kind and i am really positive about her stay there.

today i spoke to jenn a few times and we worked on some things for the silent auction. it is a alot of work and it's been difficult for me to get into the groove of things. speaking of..its almost 10:30pm and jenn just called and told me she is doing some work. the girl never stops..haha..

tomorrow night i will go stay with her throughout the weekend. i love spending that time with her regardless if we are in the hospital and she has tubes and wires everywhere. going there also gives her mom a bit of a break and that is also very important. i know she will be receiving chemo treatments till sunday possibly monday and so far she is reacting very well. i know she has felt slightly sick from the chemo but as usual she is pulling through and being super positive.

good night everyone..
please keep reading..

emotional

2006-03-28T23:24:00.000-05:00

this made me cry

1 more hour until i have to start to fast..

2006-03-28T23:06:00.000-05:00

55 more minutes until 12am.
i am packed and i think i am ready to go. i have to be at the hospital at 8am to get ready for my surgey at 10am.
i feel a little number right now.
i've been so busy with everything lately. i've been really busy doing silent auction stuff with alison. we have received some awesome things-i am excited.
i have to see how the internet connection situation is. i know i have lots of people to email-to respond back to.
i go in tomorrow and i get a procedure done to get in a hickman catheter that will make it easier to get blood and chemo, etc.
then after that, chemotherapy will start.
i will have chemo for 6 days.
on april 5th, i will have the bone marrow transplant.
i had to go to the dentist today because i cracked my tooth-on a sandwich-it is actually a cap because i feel off my bike and lost my two front teeth when i was 8.
but my dentist is donating a teeth whitening-that he will do-that is worth $450.00.
i thought that was so awesome of him. and he was giving me all these ideas.
as i was leaving he was like, Make sure they don't crack your tooth putting that thing down yr trach tomorrow..
i told them if they did, he'd have to come over and fix it.
i've never gone under like this before. so i'm a lil nervous-
it's just one thing at a time.

i want to thank everyone for everything they've been doing-and for just loving me.
people are going out of their way and anything done is that way.
my family really helps out with these functions and my girlfriend. also my friends.
my mother is back from north carolina.
i know this is really hard for people and besides my occassional outbursts of guilt of turning many people's lives upside down, i know y'all are here because where else would you wanna be?
i am the silliest.
i asked my doctor if he was ready for me.
he said "with sedation"
we'll show him!!
i don't necessarily have an army-besides the camouflage hat i wear, but i love you all.
thank you for everything.
and i am so tired. and i only have 45 minutes to eat, drink and find some good drugs to knock me out.
then no more.
well i am ready-
no more leukemia.

silent auction and entering the hospital

2006-03-25T20:58:00.000-05:00

i went to the doctor on friday-and everything looks good-i am going to be entering the hospital on wednesday march 29th.
today alison and i went around to some towns and started to hand out some press kits for the silent auction.
we also stopped by the colonial inn in norwood, nj where we are most likely going to hold the event. Right now it looks like we are going to have it on a weeknight dinner-and we are going to have it in mid-may.
some exciting things have been talked about being donated-we are hoping to get more definite things before we mention things-and also the manager at the colonial has to get approval from the owner for the price he wants to give us for the event per person.
the amount of the ticket price will just cover the per person costs into the function and then the silent auction will be where I will raise the money to go into my fund.
i'm feeling quite tired tonight. we did a lot today-and it was nice to spend the day doing some things and driving around.
tomorrow alison is going to go into more places. i usually drive around and give ideas and bring alison to places.
she is very nervous when i go into the hospital-hopefully people will help out and we can get this together.
the more people we have come to this function the better it will be. it will be a nice even just to come to hopefully. we are looking to get some kind of entertainment. that is still up in the air.
if anyone has any interest in donation, please email me or alison.
i want to get lance armstrong to sign something for the auction-i think it would be great-but i don't know how i am going to do that one. we'll see.

have a good weekend.
xo

NO TESTS----

2006-03-21T18:34:00.000-05:00

So today i got some good news-NO BONE MARROW BIOPSY-because it will only be two days out of date-
NO Pulmonary Function Test-,NO MUGA Scan-the doctor decided since i was young and healthy (when i'm not fighting the flu and having leukemia)-NO TESTS!!! yes yes yes.
We are still seeing if I need to do a chest x-ray and the blood work again-
My flu test is confirmed negative-SO nO flu-my urinalysis is negative-SO i am ready to go...
SO, wednesday is still in effect-the 29th
Wednesday the 5th of April is the transplant date-

----------------------------
today alison and i have been working on getting together a press kit-
we are getting really into the silent auction thing-
please let me know if you have any connections/local businesses that you would like to go to. please email me and i will send you out some things-or if you come over i will give you some.
----
we are aiming for may. the early may.
------------------------
i have been watching this new show on the discovery channel at 6 and 630 called the cash cab. i love it.
-----------------------
we are going to have some final proofs of the tshirts soon, so i will be able to show them.
soon.
------------------------
the little boy aiden, who i think is so amazing, is doing so well today with his bone marrow transplant-i was worried this weekend because he had cmv and i was waiting for his mother to see how it was going and lastnight-the results came back that he is negative for it. PHEW!!!
----------
today was a good day.
i brought my mom to get her hair done-and even her make up. she looks good-
my friend chris met us there--it was nice to see him. -we went to have a lil lunch in a cafe that only had one person in it. then we waited FOREVER for my mom to finish getting her face done.
so i got bored and started to play:

i also think today was good because i got verizon wireless to give me a $94 credit because they messed up, and i woke up today and realized it. i had the bill in my mind. it's so good when i wake up and am not thinking about cancer.

--------------
tonight my mom is making steak for dinner-lastnight, she made the weirdest chicken i ever had, but it was quite yummy.
it was nonfat yogurt-special k cereal and basil -...baked ---i don't know---it was so good-i don't know what else she did to it...but it was delicious. i am not looking forward to hospital food

--------------
today i was looking through pictures and found this one a few months ago when alison and i were doing laundry.

DATES CHANGING

2006-03-20T14:01:00.000-05:00

okay-let's hope this is for real this time
I have to do all the tests I have done again-EKG,MUGA SCAN, Chest X-Ray, Pulmonary Function Test, Blood work (like SOO many vials), bone marrow biopsy-within this week
March 29th-entrance-chemo begins
April 5th-Transplant.

I am waiting for my nurse to call back to get info for the tests-and hopefully this will be it.
Love y'all

updates.

2006-03-20T11:07:00.000-05:00

well it's monday and i am waiting for hackensack to call to see what the results of my flu test are and when i will be going in if things are okay.
i am getting hives on my face almost daily, i assume it's stress but this also has happened after chemo quite a bit. it is annoying and makes me even more tense.
i think some people are getting confused by blood and platelet donations VERSE a bone marrow donor.
I have a bone marrow donor. I have a 9/10 match. This is found through HLA typing and DNA -and my blood-it is very hard to find a donor.
BUT that is not just blood and platelets. The blood and platelets will help when I am going through recovery from the chemotherapy I will get that will kill off my cells. Because just as the chemo is intended to kill off bad cell (in my case leukemic cells) it also kills off my good red cells and platelets. It brings them down to very low levels, so I need transfusions.
I know this can get confusing, but I hope this helps.

I have a lot of friends who are great musicians/actors/artists.
One friend, Kristen Wilkens who has been so amazing-and her family-through this is going to be performing in a show in Oradell, NJ. The show is Proof for the Bergen County Players.
Kristen and her mom brought Alison and me groceries one day, which was amazing. -filled with yummy food-and also her mother had written this little note with a quote(that is now on my fridge):
There's a miracle of friendship that dwells within the heart
And you don't know how it happens or where it gets it start
But the happiness it brings you always gives a special life
and you realize that friendship is God's most perfect gift.

I have amazing friends that are just too many to mention but I feel that when something really special comes up that they are doing, I like to at least let people know. This has nothing to do with my medical fund. This is just an amazing person who I think you'd enjoy going to see.

For more info: http://www.bergencountyplayers.com/Season2005-6/proof.htm

just copy and paste that link.

I am really into getting the fundraisers together, and having people step up and get some going on.
Alison is getting some tee shirts done for me. I will display the way they look, once we have that finalized. One is of writing I did and another is a little bit different.

I also want to thank everyone that is going out to donate blood/platelets. It's so amazing. It makes me cry.
I need to go make my bed.
I was in this contemplative psychology class a year and half ago and the teacher was talking about how his teacher said "your room is yr reflection of yourself"...so there are definitely days when i want to throw things around and make it messy and leave the bed like that but that just makes me try to keep it together.

good day.
xo

An article in Today's Bergen Record

2006-03-15T13:11:00.000-05:00

Bergen Record Article Today

congress..politics

2006-03-14T10:29:00.000-05:00

i don't vote republican, but regardless of that, the situation is we deal with what we have in office and the choices that people make. i know that i am not that knowledged in different sections of life in the government, but I read something today that infuriated me. AND MANY do NOT Know. I will do more research on this, but for now, here is a blurb from a letter that i received from the lance armstrong foundation.
"Congress is considering a budget that, for the first time in 40 years, slashes funding for cancer research programs, cancer survivorship programs and important cancer-related initiatives.

If Congress approves the President's proposed 2007 budget, lawmakers will effectively turn their backs on our national commitment to defeating one of our leading killers and turn back the clock on progress against the disease Americans fear most. As proposed, the 2007 budget cuts the Centers for Disease Control and Prevention (CDC) budget by $179 million and carves $40 million from the National Cancer Institute (NCI). Far from arbitrary figures, these funding cuts translate directly into diminished research discovery, treatments and programs that help people with cancer live life on their own terms.

While all of us understand the need for budget constraint and the difficult choices facing our elected officials, we also know that taking money from the fight against cancer is not a tough choice - it's simply the wrong one. "

It is so sad to me that we are concerned about finding new life forms in space instead of at least comforting the life forms here. There are cancers that have no chance of cure-that have meds to alleviate the pain-and to prolong life just a little longer. Until ther is a cure, you'd think the government and everyone would be on the same bus to put all the money towards this.

This thing for me with Cancer is that it happens to everyone. AIDS was a challenging disease for years and our country shamed it as the Gay Man's Disease for years-and some people still do. Many of my gay friends when they told their parents they were gay, the response was fear of HIV. But many homosexuals fought for funding, through artistic expression in the 80's, the lower east side artists really expressed themselves about HIV. And then when the Clinton Administration entered the White House after a few years, they really changed things up and gave funding to AIDS.
Cancer is the BIG THING now, especially breast cancer. I can't go into any store without having anything pink that is towards fighting breast cancer. Breast Cancer and Susan Komen Foundation have done amazing things but there are so many cancers that don't have that recognition and all-all cancers need it.
I am not big on the government because I am a little person with big dreams. And sometimes now in my life, I am selifsh in my own head just trying to fight my own disease and prepare for a bone marrow transplant and how rough it is going to be. I am scared of the financial burden ahead. I am scared of how shitty I will feel. I am scared. But I try to just keep chugging ahead.
I have to keep many of my fights personal right now but at least on the blog, I can put this out there and let you all know what's happening and if you want and have time, fight it a little bit.

updated website

2006-03-10T21:36:00.000-05:00

my website http://www.jfmedicalfund.org
has been updated-
there is a fllyer that can be downloaded and read to get people to go out and donate blood/platelets.
I also put contact info in case anyone wants to send me anything directly.

today was beautiful out.
i went to new york with my parents for lunch. we went to one of my fav. lunch/brunch restaurants called Markt. It is Belgian. It is near the meat packing district in New York. We then walked around-and I brought them to the Chocolate Bar. Another Fav. place for some cool chocolate bars.
We came back to Hoboken after some traffic and hung out at my apt. I can't really go out much because I am trying to really get over the end of this flu and I do not want to expose myself to anything else.
I really wanted to go out to dinner with Alison tonight but everywhere around Hoboken is so packed that we just decided to come back home and i'm going to eat veggie dumplings and a sandwich.

Tomorrow is supposed to be great out also. I know that the delay in my transplant stinks but at least I get some really great days to be outside. They are what you dream about when you are stuck in hospital rooms for weeks.

I am really excited about the tee shirts that we are going to sell but I can't show until we have the final product. We are still also looking at how much it will cost and hopefully can afford to get them produced.

I think I'm going to chill out and go watch a movie or something.

Check out my site and enjoy the weather.

xoxo

DELAYED AGAIN

2006-03-09T18:42:00.000-05:00

hey,
so i just got a call from a nurse at Dr. Rowley's office-
and my flu test today came back positive so now my transplant is delayed until the test comes back negative.
i have to go back on monday to take another test and hopefully this one will be negative and then i will go in the following. So now we are shooting for me to enter the hospital on March 22nd.
Last week, one doctor was going to give me Tamiflu and the rest thought I just had a bad cold so I was taking so many drugs to get over this. Meanwhile, i was having chills and fevering, but i am through the worst of it hopefully.
So now it is just completely getting over everything and waiting until my cultures come back negative.

STOP I'm Delayed.

2006-03-09T10:56:00.000-05:00

okay,
so i am not having the transplant-well going to the hospital until...next week because i still have the end of a cold-and my doctor was concerned..he said, getting this type of virus that he thinks i have-if i got it without an immune system or an immuno-suppressed system there would be a 25% chance of death. he LOVES his statistics...we walk in his office and i sit down and i am like "i am like 93% good for this but i still have a cough and runny nose" and then he goes ... "let's do numbers" and i take one of his folders, and i start hitting myself on my head saying "I HATE WHEN HE DOES THIS..it terrifies me"...because they are always statistics, and he told me that number...and the deferrment of this is fine..i then said "well saturday is supposed to be really nice anyway..." and he said "DO NOT GET SUNBURNT"...i was sorta happy...who wants to be in the hospital...i am still in remission so we have a little bit of time, and there is no need to chance that.
SO anyone who is planning on donating...it is delayed one week-but i will need blood and platelets for a long time...
besides that,
things are good in my world..pretty good..
my laptop did this really funky thing last week, where it kinda crashed and was making this noise liek a blinker would...i called someone i knew at apple and she said, it sounds liek a hard drive malfunction, so put everything on yr hard drive because it might be crashing.
i wish i could get a new computer...like the new powerbook or something..but it's pricey-but it would be awesome becuase my brother bought me the new sims game and i want to play it but my processor is too slow...i would want to get the 15" or 17" with superdrive but it's $2500.00. I can't afford that now...so i will just hope this doesn't crash and if it does, we'll go from there...
my mom is doing okay-she is still sleeping, it's like 11am. i went to bed lastnight at like 8:30/or 9pm. i don't remembr but i crashed on the couch and then i went right into bed and slept and fully slept until 9:30 this morning. i didn't even hear alison getting ready for work, she is like a mouse...
i might be working on a compilation cd that might be for sale like distribute it and stuff with this independent musician who said she would put it through her record label. so that is really cool.
alison might be making shirts..i really like them, but we are checking out prices...maybe sell them or something...or i don't know...
also alison is putting together a silent auction...we are trying to get some really cool things-and to talk to some people who might have some great things...if anyone knows anyone or has some ideas/things, let us know..everything is tax deductible for the person who also gives the thing to be auctioned.
alison is actually in charge of this, and i know we've been talking to some record labels...and i know that they are donating some cool things..and vh1, some artists...might be donating some things...i know i need to get more sports oriented too..
i think we are looking to have this near my old hometown of norwood, nj...
the old tappan high school's superintendent has wanted to do something with me so i'm contacting her and waiting for her to get back to me to see what is going on there...
my best friend was looking into doing a bone marrow drive at ESPN in connecticut, but i don't know what is happening there...
so much has been going on and people are still doing things and that's great.
ha, i don't know if any of you know this but my user name for this blog is leukylegs because that is what my best friend's nickname for me was...because i always get people to rub my legs as a calming method...
here are some birthday pictures...
my sister throwing frosting-all over me...

i used to wish for puppies until this year...

please donate blood for me.

2006-03-06T14:31:00.000-05:00

Last week was difficult because of course, I got sick.
We believe it was a virus, but I am on antibiotics anyway right now.
It seems to be coming to an end and my admission date has been moved from March 7 to March 8th right now. It might be changed again but as of now, it is Wednesday morning. I will be admitted to the hospital and get surgery to get a cathether put in-in my central line to make ivs easier.

I will try to keep you up to date with what is happening.

The most important part of this email for me right now is here:
You are able to donate blood and platelets for me privately at Hackensack Hospital.
It would be amazing for people to donate blood for me and even more amazing with platelets.
I am AB+ blood type and my donor is AB+ so we i am able to receive any blood type.
So if you are able to donate blood, please set up an appt for a private donation for me. this will go directly to me. I will have your blood. You will truly help save my life. If you have more time, please please please donate platelets. AND PLEASE SEND THIS OUT TO AS MANY PEOPLE AS YOU CAN THAT MAY BE WILLING TO DONATE.
friends-can come in before the transplant to donate
my family must wait until the day of the transplant for some reason.
if you'd like to donate blood-it will take an hour
if you'd like to donate platelets, it will take 3 hours-
I think you do both if you are willing.

Please call Martha at 201-996-4819 and say that you are donating for me. Jennifer Falkenstern. My date of birth is 2/20/79.

The hours of operation are Monday thru Thursday 8am - 6:30pm and friday the latest appointment is 2:45pm.

There is no charge to do this.

--
on thursday I had an appt with my transplant doctor and right now my biopsy is showing I am still in remission.
the only information I know about my donor is that he is a male and he has the same blood type as me AB+.
He is a 9/10 Hla typed match.
I also had to sign a form that I would use him as a donor because he spent more than 5 years in europe. (mad cow)...but he is my best match. i will not be able to know anything else about the donor for a year.

-----
also, as far as fundraising goes.
alison solomon is currently setting up a silent auction. we need people that are willing to donate things-people that are willing to help out-people...actually I don't know what she needs... it is better to talk to her, but i thought i would let you know.
you can contact her at: alison.solomon@gmail.com
if i think that you might be of help with this, i might give alison your contact info as i am not going to be much help in the hospital and sick.

please write me if you have any questions.

love
jenn

2006-02-23T00:38:00.000-05:00

up and down-roller coaster-
i know that the next leg of this will have it's ups and downs-but these two weeks out of the hospital have been so bizarre to me. i've been trying to balance myself again.
i read this book that i thought was really great but i think really imbalanced me for a few moments.
my counts are coming back up which is great-so i was saying to my mom the other day-i almost feel like my body feels okay-but my mind is not with it...i thought about finding how much a private yoga instructor would cost would be to come over to my house.
ha-for my birthday i didn't want strippers i wanted yoga instructors.
monday was my bday and i turned 27. my mom, dad, grandma, girlfriend and some of my closest friends came over to my apt and we had a good time. it was really amazing to have people around. it was a little overwhelming for me in this way of "wow, i am so grateful to have people in my life". when you go to the cancer institute or hospitals you start to see how alone people can be and it is so so sad. i am lucky to not be alone. i got some cool gifts...dvds...an ice cream maker! ...itunes gift certificate...smelly things-candles and such-i wanted polaroid film but bought that today-everyone that came here, wished me a happy bday..thank you
...
lastnight, this little boy who i really have grown to adore without knowing, aiden berges, got his bone marrow transplant-i believe he will be 4 in march-...i think...and he's such an inspiration to me....his mother and i write..and it's such a great contact for me, just to talk to someone going through this-and another mother-but if you ever want to read on his stuff...if you go to www.caringbridge.org and then go to "visit a site" and just where it has the html put aidenberges -all one word, his info should pop up. sometimes i wonder what it's like to be a 3 year old going through something like this...amazing.
...
i have been getting a lot of paper work together-i am trying to prepare now for my next hospital situation. i am really glad i had a little more time to prepare
----
this weekend, my brother, sister and taylor are coming from north carolina-unfortunately, the flights were so expensive into newark, like 750.00 that they are coming into philly and we are getting them. we tried calling the airlines to see if they would do anything and of course they wouldn't....so expensive! ...but i really want to see my family-before i go into this-i am really excited to see taylor and my brother and sister-i know they wish they could be here more...i wish they could too...things are stressful now, but we are trying to hold it together---

i am slowly recovering-and getting better with some things-it is almost 1am and i've been up filing and filling out papers--it is time to crawl into bed....tonight, my dad came over with a delicious cake from this swiss bakery. alison, mom, dad and i played cards. it was nice.

i want to learn how to put my fear into hope.

as my niece says...

2006-02-14T09:35:00.000-05:00

"aunt jenn is bald!!!"

happy valentine's day
today i have a bunch of tests to do at hackensack hospital.
my counts are going up.
my platelets are at a normal range-they haven't been that way in two years.
i'm having some anxiety but am using medication for it.
today i got the sweetest email from rebecca eisen's mom. rebecca was my sister's best friend and my good friend. she had a rare disease that put her on steroids for over 5 years. unfortunately, after tapering off for some time, her disease looked like it was coming back and she was not capable of dealing with it any longer and took her own life. it is hard to understand someone taking their life but rebecca's life was so different than what rebecca wanted her life and it was years! since 19 years old...it is a lot to ask of someone. she took her life on june 14th, 2004. it was only 1 month after i was first recovering from my leukemia and i was so sad by this, and scared. and i selfishly also thought about myself relapsing, if i could do it and ....unfortunately, and fortunately, here i am doing it. and trust me, it's a bitch...but it's life...
here is an email i received from her mom today that i thought was one of the greatest notes for me..it was so beautiful...
Hi Jenn,

I was in Boston this weekend for a meditation training, Shambhala, The
Sacred Path of the Warrior. This was level 3 (there are many), and the focus
is the warrior in the world. I thought of you. In ancient times, the warrior
learned to master the challenges of life, both through gentleness and
courage. Again, I thought of you. Working with my mind, my thoughts, has
helped me through many difficult and painful moments. Your path is a hell
here on earth most of us can only imagine, and still not even come close to
truly understanding. You are truly a warrior. Thinking of you with love,
Judy

On March 14th, I have my transplant-it's rebecca's birthday-how beautiful.

have a good day
love a lot....

i need to go get ready for my day of heart tests...

a mass email i am sending out

2006-02-09T11:23:00.000-05:00

hello
it has been a while since i have written an email. i was hoping that people would just check out my blog but i still find it important to email when there is important news.
first of all, i got out of the hospital!. monday night-it was late-it's weird to be out-i was in 4 weeks!! so it's sorta weird to be out again-and it's also been hard for me to deal with living on the 3rd floor. the second flight of steps terrify me, but i'm trying.
my bone marrow transplant date has been changed! . i am now going in march 7th for my next round of chemo and then march 14th for the transplant. This is better because it gives me time to recover and potentially time to have my brother and sister come visit before I have to go back in the hospital. Also there are many things/tests I need to do before the transplant and everything seemed so chaotic to me because I was scheduled to go in February 14th. This recovery has taken me a while. My bone marrow has been beat up and this round of chemo was very intensive. I did really well. I mean, it sucked but everything was expected that happened. There haven't been any awful surprises.

Today i went to the cancer institute and I had to get up at 8 am. I was so nervous. i didn't want to eat. But i started to vomit. I was just vomiting and vomiting. I felt awful. My nerves were so whacky. I took some ativan to calm me down-and knew I just had to do it. i was scared because I had to go downstairs and also I was scared of getting a transfusion through my veins because they are not the best. BUT, my counts seem to be sticking and it looks like I am finally recovering. Lastnight was difficult with my bones/joints, I had to take painkillers-but I had bad sleep. However, my WBC is up to 8.6 and my Hemoglobin is up to 9.7 and my platelets are up to 64. So NO transfusion today-My WBC is high because I have to inject this stuff called neupogen in me that stimulates my bone marrow which is also what causes the achiness in my joints/bones. However, after I stop taking it, my WBC will half if not go down more. Because once the stimulation is gone, my bone marrow starts to just produce on its own, but it's still somewhat slow.

But hopefully we are done with transfusions for now and we can spend this time recovering and walking and fighting those stairs. I wish I had an elevator. We've been thinking about moving but that seems so difficult, but this is going to be so hard for me with the transplant.

My mom has been with me a lot. She stays with me and takes care of me. Even at 26, it's necessary in this situation to have my mom.

I'm going to watch jeopardy.

Love
jenn

sunday night superbowl

2006-02-05T22:13:00.000-05:00

so i decided i root for seattle because i'd rather live there than pittsburgh.
oh well.
i thought i would be capable of writing more than i have been. and i guess i am doing the best i can. i have been consistently nauseaus and just dealing with loads of transfusions-
i am up and walking and might possibly go home tomorrow. there are pros and cons to this. since my counts are still low, i will need transfusions and when i leave here, they will need to take out my pick line-so that means they will hav to use my veins and i have terrible veins. i might also need to travel to the cancer institute everyday for this injection of neupogen that helps increase my white blood cells. but i am ready to go home. i've been here for 4 weeks!! longer than i expected-the longest i've ever been in the hospital.
i am anxious because i am not near recovered yet and i am scheduled to arrive at hackensack february 14th. this is not giving me much recovery time. i have called my doctor. we are going to see what to do about this because he thinks i should have a week off of things or at least a few days and i am not through this chemo yet.
my insurance coverage is all taken care of, thank god. that was quite a situation.
i really appreciate the emails and it is the best way for me to communicate. i barely answer my phone. it's hard for me, for some reason. and those people that come visit, thank you so much.
if i'm not writing back, i am definitely reading everything-and coing online-at least one every other day-...at home, i will be on more often and try to catch up with everything.

i'm especially lucky to have my girlfriend and mom who are here so often for me.
i hate mentioning people but i have to say that my friend jenna is incredible...she calls me everyday, even if i don't pick up. comes down every week from connecticut, she makes her schedule around me-right now and has decided to not move to los angeles because she wants to stay close to me. she is strying to set up a bone marrow drive at her work. she has been a constant support. jenna and i have been friends for so many years. and we've been through so many things together. i say she is my best friend because she is most loyal and trustful person i have ever met. i don't mention jenna as often as i should have and she deserves an entry of her own, truly does and i don't like doing things like that but she is incredible. when i told jenna i was diagnosed again-i got about 5 phone calls-neurotic...and it is so hard for me to deal with this and in this, she makes me smile..and the last phone call, usually is a cry and it was jennas on the other line, saying "jenn you are the one i call about these things, where do i go?" and i told her "you still come here"...she is my anam cara.

i am blessed by all the friends i have...the people that trudge here...and those that deal with watching me go through this...and sometimes people don't want to see people...not me..a new person enters this room, it gives me reason to try a little harder. i am blessed by my family. ...offering support physically, spiritually or just through email...

i know i'm one unlucky person for all i go through but it is all equal...i lay down with my headphones on and smile and think i am one of the luckiest people int he world with the poeple i have...there are people out there looking to be famous..some for the true value, some for teh actual fame but regardless of all of it, when you lay in a hospital bed-it's about who REALLY loves you and it isn't about who people are...

i am missing my family ..;.my brother and sister are in north carolina...i miss my favorite family in boston, judy and the boys...christopher and alexander are like my little brother...judy has been such an amazing support in so many parts of my life...i miss laughing with these people and hearing their stories.. alexander is making dvds now. i hope he sends me one. i can't wait to watch...i love supporting him. i think he's an amazing person with such a brilliant mind. i have some of the best phone conversations with him.
i miss my niece and i don't even know what she will do with my bald head. i miss my bed and my apartment. i miss so many things.
but i cope and i deal and i know this is the way it is.

we are going to do this. we are all in this together-
and if you hold my hand, you have a part of this too...
i love you.

painkillers,knee aches

2006-02-01T20:39:00.000-05:00

please excuse me if this seems scattered at all...i am lots of pain killers because I have had some knee pain today. This morning i woke up and i could not walk on my right leg. it was very difficult. i know that my joints can start to feel pain because of the neupogen (bone marrow stimulating medication) but this was just one knee. Throughout the day it was checked out. Some doctors were scared it was a possible infection, I had fluid in the day, but luckily, nothing was found. I did also take an xray but I will not know the info on that until tomorrow. But pain killers are helping this situation out.

Today I got a disturbing phone call from hackensack hospital letting me know that the case manager of my insurance called to inform them that my insurance had been cancelled at my college since january 14, 2005. So here I was, hooked up to a blood transfusion, on these pain killers, steroids, benadryll, barely staying up, being told this information. I sprang from my bed. This was so frustrating. I had been talking to my college since the end of November and my student advisor said she would take care of the exit form. I also spoke the the lady in charge of medical health insurance to make sure I could keep it even in the event of a medical absence. She said she was 99% sure that it was okay to do that and once Leah filled out the exit forms and they were sent through-everything would be fine. I was assured everything would be taken care of in NOVEMBER. A week after January , I did try to email my senior advisor but did not hear anything but assumed this was such a critical situation that everything would be okay. BUT TODAY on February 1st, sitting in my hospital bed after three weeks with my bald head and serious medical condition I had to do deal with this. I called my school-Eugene Lang-The New School -and I started to cry to the Student Health Insurance Manager, Jeanette Krupinski because i was overwhelmed. And honestly, I was hurt by the fact that after three months of this and the critical situation I am in, I do not have time to waste. This is a half a million procedure and that is not including the pre and post transplant costs.
Jeannette did get on this right away and I did have to fax some things tonight. I will see how things go. At Hackensack, the case manager said she would look into next week. So I have a week,to clear all this up. I thought it was really great Jeannette put herself out there right away.

The fevers have slowed down. I am waiting for my counts to go up so I will be able to leave. Everyday seems like something and if I do not write, it's usually because it has been quite a difficult day for me. My WBC is only a .3 today but yesterday it was a .2, so we are inching.
My nights are sometimes difficult. I usually wake up every hour or every other hour to use the bathroom. Sometimes the nurses are now letting me off the ivs to sleep and i tend to sleep longer then. At around 530 am, i am woken up to get blood taken. Then at 6am, I woken up again to take my vitals (blood pressure, oxy level, heart rate and temperature)-at 7am i am woken up to take a nexium to help my stomach lining. Then at 8am, vitals are taken again-and then there is also the morning nurse that needs to come in and hang a prescription bottle iv and then usually we will talk about the day. I sometimes try to sleep longer if i can. By 9am, I am usually shown my blood counts and we see how my WBC is doing, how my hemoglobin is doing and how my platelets are. Then the doctor will decide if I need a transfusion. In the morning/early afternoon-I typically get my transfusions as long as my temperature stays down.
I am so drowsy now. Please ask me any questions if you think of any.

OH____Hackensack called tomorrow-I am scheduled to be admitted on february 14th and then have the transplant after 7 days of chemo-February 21 will be my transplant-a day after my birthday...
i have been a little hesitant because i really want to have a few days to recover from this and just be able to eat indian food or do the things i haven't been for 5 months.

I want to thank everyone for emailing me and for coming to see me. I love you all...

COUNTS GO UP!!!!

day 14

2006-01-23T23:02:00.000-05:00

this weekend started off pretty awesome. my mom was able to leave and get a few days off because alison usually comes here for the weekend. I was really excited about seeing alison and just spending time with her. it's weird to not spend almost everyday with her, but this is a part of coping. we talked about a lot of personal things and it felt good to be open and honest about things. Saturday I woke up and I was still feeling okay-I needed some transfusions-only platelets, my hemoglobin was great, it was an 11. so we watched a movie and i got my transfusion. Then Alison's parents stopped by, Chris came by forever, Jenna's parents and my dad also stopped by. It was like a parents convention in here. IT was really great that everyone came by. It seemed when almost everyone had left, I started to feel myself get hot. And then my face had been flushed---BOOM, i had a fever--it happened at 2 in the morning-alison and i were up all night-i was shaking chills for such a long time--it was uncontrollable. for a while, i just wanted to sweat but since it had not spked, it was not sweathing. I had all these ice packs on me although I was shivering because I was hot. The next morning-which was Sunday morning, my nurse said my WBC WAS .0, meaning I had NO white blood cells. As my doctor said, from someone who has leukemia in their induction, this mostl likely shows remission, but if you want to be a pilot for the u.s. navy than you might have some problems. Sunday morning, my hemoglobin had dropped from 11 to 8. The fever took a lot of my electrolytes out of me also. I had to get this potassium phosphate iv that dropped in for over 6 hours.

my temperature has gone up as far as 103.8, and it's been non-stop intensive tylenol, ice packs and this other medication.
I woke up this morning-and my counts had dropped quite a bit but a few decisions had been made. Also since Saturday, I have not had much sleep at night. Anyone who has stayed over with me, has been up all night dealing with the shakes, the trips to the bathroom and so on.

day 14 of a chemo round with an induction or my case, a reinduction therapy-day 14 means bone marrow biopsy.

but today was day 14. So first of all, i knew we needed to do a bone marrow biopsy. But it was decided that my triple lumen port would need to be taken out because it could be one of the reasons I was getting these high fevers. But before I needed to get it taken out and something else put back in, I would need two platelet transfusions-but this also would require me to keep my temperature down.
We did the bone marrow biopsy and that went well comparative to the other ones I've had lately.
Then my fever went up to 102.8 so even on all the tylenol they were giving me we still had to wait until it was under 100 degrees.
we got the first one in after about 2 hours but the other one for my temp to come down again took another 2 or 3 hours. We did not do it until 4pm. The nurse had to walk to special procedures with the bag of platelets. erica came by today and went down there with me. we saw melissa, an old nurse in the unit. she hit me and was like "what are you doing here??"
it is 11:15pm and i am getting my blood transfusion finally. because my temperature is low enough for them to do it.
i have had this head ache that i hope is just related to the fevers and the tiredness I'm enduring.
the doctor thinks that I will take 5 more days until my counts start to recover. It does seem so long when you are fevering. I hope removing the triple lumen will help a little bit. well it is almost 11:45 pm and I've had a rough day.
i love y'all.

day 8

2006-01-17T16:13:00.000-05:00

today the chemo is really taking hold over me. the pooping and vomiting. i am tired quite a bit. today i needed to get a platelet transfusion-so that was benadryll and tylenol and steroids-i need to take steroids because i have had an allergic reaction to getting platelets...so it's been icky of going to the toilet-and then vomiting-and then needing ativan to help with the nausea. In about 7 days, I will be getting a bone marrow biopsy to see if I am back in remission. which hopefully I will be in.
I want to set up a fund raiser-auction/type fundraiser type thing.
I got news yesterday that I will be able to go in for my transplant-mid-late february. It is a 9 out of 10 match and there is a donor. So after the recovery of this, I will be shortly admitted to Hackensack.
I will get another round of very intensive chemotherapy. And then the transplant-I will be in the hospital for 3-5 weeks.
This is very good news. I am scared-and it will be hard-but I am going to beat this.

chemo,ativan...

2006-01-13T20:13:00.000-05:00

it has been a few days since i have posted and that has due to my lack of wanting to be able to be in front of a computer-
i really don't want to talk on the phone either so the only way to see me sometimes is to actually come in and visit me.
i started chemo on tuesday evening-around 445pm. i have one chemo that starts at about 445pm and that goes for about an hour. an then another that goes on right after that and lasts for 6 hours--...then i have a 3 hour break-and the i get one that runs for 15 minutes...today is my fourth night. i have 2 more days. of this-it has been very nauseating-i have thrown up a few times but mostly have kept myself on ativan to keep myself up and to keep myself from throwing up.
i really want people to focus on fundraisers-and such. i need to do more bone marrow drives.
i will be here until my recovery-of my counts-so that will probably be at least three weeks.
i have had a few blood transfusions already-my counts are down...more. my hemoglobin is only around an 8 and my platelets around a 50. my wbc is falling which is typical becuase of the chemo-these counts will be at their lowest in about 10 days form when the chemo ends-so i will probably be getting tranfusions-everyday...for the next few weeks.
i just hope to not get an infection, but we will see what happens. if i avoid infection-i do not need to go on antiobiotics and that is very good-it is usually very difficult to avoid infection with such a low wbc but we will see what happens.

i love you all and thanks for your emails. i hope that people are checking out the blog to see what is going on with me.

thank you

back in the hospital

2006-01-10T00:35:00.000-05:00

today was the first day back in the hospital. i was terrified.
it is past midnight right now and i should be trying to sleep but i thought that i would try to write an entry before falling asleep.
today was crazy.
my mom and i arrived at the hospital at 1pm. we had to wait in the admittance room where all the little kids were staring at me with my mask on. After 45 minutes of waiting and getting situated, I was told I would be on the 4th floor, which is great-because it is the bone marrow transplant unit and I know some of the nurses. IT is an intensive care floor and I am checked on quite often. As soon as I got up here, I had to fill out papers-and then I talked to the Dr. who had done a bone marrow biopsy on me before and he said we had all these things to do and might start chemo tonight.
That has not happened, we are starting tomorrow morning.
So then it was filling out papers, consenting blood forms, signing the bone marrow forms...
I had to be checked in by the nurse and also had to check me out. Then I had to get the blood pressure, weight, height, ...done. Then i had to get blood drawn. This was all around 2. Then as soon as all this was done, it was onto the bone marrow biopsy. This was quick but the doctor hit a nerve-and i had tingly-pins and needles like feeling all te way down the back of my leg to my foot-and i was terrified I could not walk. This was how it felt-and I was told I needed to lay on my back for an hour. It slowly started to go away but was still very tingly for a while.
After this, waiting and finishing more paper work-discussion some chemo-
I went down to special procedures to get a triple lumen portacath in my neck. There was talk of it being by my subclavical-but there is more risk in that-there is a possibility of doing something near the lung, and the soreness and pain can be worse. Cosmetically speaking, that might be nicer, because i have some iv looking things coming out of my neck, but it sounded more safe. And being that my counts are so low, I want to go for safety rather than looks. I was down there for about an hour. My mom came down with me but had to wait in the waiting room when I went into the surgery-or whatever it would be called.
SO finally, this was done at about 530pm. I had barelly eaten or drank anything all day. I had an English Muffin in the morning and then half of a bagel with nothing on it between the bone marrow biopsy and the putting in of the port.
I thought I was done because I needed a MUGA test (i think it's called ) and they decided they would wait until tomorrow to start the chemo. This test is to look at my heart and to see how the function is with pumpin because I have had chemo before. The place that does this test closed at 4:30 pm so they decided they would do that in the morning.
So I thought I was done...i was looking through my charts...asked my nurse for a copy of my blood results...and then as I was doing that, the attending physician Dr> harrison entered my room. He is amaazing...funny...and really knowledgeable. We had a really great conversation. I asked him about my doctor for my transplant...and to put it bluntly, he said he was the best doctorfor this in the united states...i was blown away. Dr. Rowley worked with the man that is sometimes credited for the first bone marrow transplant. It made me feel like all the decisions have been right ones.
So after our conversation. My mom was here too...we had a lot of laughs...it was nice...
My mom left to get some food-and I was going to order-and someone comes in and says they can take me for the MUGA. So i was brought down to this kinda weird room with this machine that looks like somewhere you would get like an MRI. and they injected something in me and we had to wait 15-20 minutes...then he put something else-like a dye that would connect to the red blood cells and let them see what was going on in my heart. HE had to inject some radiation into me, but not too much. He said getting an Xray causes more radiation. This lasted until about 8:00pm. I was so hungry and tired...and in pain...
I also have had to take 400 milligrams of diflucan (anti-fungal), another medication for my kidneys, a birth control pill (to stop period), acyclovir (anti-bacterial), percocet (for the pain, 5mg oxycodone/325 tylenol).
So tomorrow morning, I start the chemo-I have three different types-for 6 days. I will most likely be here until I recover my counts-so 3 weeks about...
I need to try to sleep.
My dad came over and hung out with us. Alison is coming tomorrow and then Jenna is coming wednesday...

I need to sleep. Goodnight-

the email i sent out tonight.

2006-01-06T01:01:00.000-05:00

hello,
i hope everyone had a great holiday season and a happy new year. i feel that something was allowing me to get through 2005 and january 1st, my body felt so tired-of course i was up until 430 in the morning but it was this "sick" tired. i went to the doctor the following day-and sure enough my counts have dropped down a lot and after looking through a microscope at my blood, there were some cells that were looking leukemic-about 5%. This was enough for my doctor to call me today and after a conversation with my transplant doctor in hackensack and a transplant meeting with all the doctors at the Cancer Institute of New Jersey, they all agreed I should begin treatment. This treatment is a round of chemotherapy. On Monday or Tuesday, depending on when a bed is available, I will be admitted to Robert Wood Johnson in New Brunswick where I will get a 5-7 day treatment of chemotherapy. I will then be in the hospital and I could be in there anywhere from about a week and half to four weeks.
my doctor thinks that it is better to go into a transplant in remission and that is what we hoep to achieve with this. of course this will be very intensive chemotherapy. It is called reinduction.
Then after recovery from this, I will hopefully be ready to get the bone marrow transplant.
This will again require another round of chemo-intensive-as I have discussed before or if up on my blog and then the transplant.
So this news is not shocking but it kinda sucks.
However, i did receive some good news that they have found some donors that are matches. They are not perfect 10 out of 10 HLA typed matches, but 9 out of 10 and they say that is okay. THey have not identified one specific donor yet and said it would take at least four weeks. With the rapidness of leukemia, there is no way I would be able to just go into the chemo and then the transplant. My doctor said that people who are in remission do better with transplant and as much as I hate to agree because it requires me to feel like shit, I have thought this from the beginning. But if what I am looking for is a cure, I just have to fight it and deal.
Many things have been prepared for and I have been able to finish school for the semester. I chose to take a medical leave of absence so I have had about a week and a half off but I have also been waiting to start fighting this. My hemoglobin has dropped and that has been making me feel tired. I feel okay and it will hopefully make it easier to fight this and not the opposite where I feel more awful. But whatever it does, I will knife it.

So in an optimistic view, at least I am going into this chemo round knowing there is a donor for me. So after the recovery, I will be able to do the transplant.

------------------------------------------------------------
FAQS:
Q: I do not understand when you say there is now leukemia in your blood, where was it before?
A; In September, there was no evidence of "blasts" in my blood, there was only evidence, approx. 5% in my molecular structure. It was only during this certain test called FISH (don't ask me what that stands for-ask my doctor) that they were able to detect this. There has only been evidence of actual leukemia looking through a microscope with my blood in the past two weeks.

Q: Why do you feel so tireD? Does leukemia only affect your white blood cells?
A; Leukemia affects the whole bone marrow. Although the leukemia is created through the white cells and affects primarily the white cells, it starts in the bone marrow. Because it starts there, it starts to deter, not only white blood cells to be made to destroy infections, it also decreases my hemoglobin ( red blood cells-Hemoglobin transports oxygen from the lungs to the rest of the body, such as to the muscles, where it releases the oxygen load.) This leads to feeling tired, suppression of appetite, an increased heart rate, etc. A normal hemoglobin is between 12-15. Mine right now is at about a 10. That is okay but it can get a little below 7. And it is extremely tiring-and weak. Another type of cell that is made in the bone marrow are called platelets. Plateletes are minute, nonnucleated, disklike cytoplasmic body found in the blood plasma of mammals that is derived from a megakaryocyte and functions to promote blood clotting. The decrease in platelets lead to taking longer to heal. A normal range is from about 140,00 to 400,000. I have about 60,000-70,000. That is actually okay-right now. But after chemo they can go underneath 10,000, which can be very dangerous. It is very important not to fall or get hurt or cause any bleeding in the gums because my body would not be able to stop it. So the whole bone marrow is affected with leukemia.

Q: what is the process of chemotherapy like?
A: chemotherapy is different for everyone. But in the other times I have been through it, there is the week of getting treatment-Oh this is the process for leukemia. Please know that all cancers have different treatments and what people are able to do. For the type of leukemia I have it is mandatory to stay in the hospital during chemotherapy. After the chemo-it take a few days for my counts to go down. My WBC will usually go to a .2 or .1 which is very low so it is important to stay away from infection. Hemoglobin and platelets will also go down. Even though chemo is trying to kill the bad cells, since it is basically rat poision and doesn't know what it is killing, it also goes after good cells, so those are the cells that will hopefully come back. IN the past after the chemo it has taken about 2-3, even four weeks for the counts to come back to a "normal" place where I do not need blood or platelet transfusions. not needing transfusions at robert wood is when hemoglobin is above a 10 and platelets are above 10,000 or 20,000. I usually make them give me a transfusion unless they are over 20,000.

I want this to be informative for people and to understand what is going on with me, and what I am going through.
I want people to keep doing bone marrow drives-to setting them up.
I am switching over soon to a different type of fund that will actually be tax-deductible and is run through a transplant fund-
if people to send donations to me, they still can but will not be tax-deductible. I am mainly also setting this up to do some fundraising. I have Old Tappan high school who is interested in doing something. I need people to keep being active for me now if you can.
I have faith in the hands that I am in and my doctor -Dr. Schaar is a really amazing doctor. And my nurse practitioner, Laura, the person that I really relied on the first time, came back the time this happened to me and instead of seeing that as bad luck, I see myself as lucky to have her by my side again-I can't say that the administration is great-it needs a lot of work but these people really know what they are doing-and I have faith that they are doing what is right. And I think it's the right move because if I didn't, I would be fighting. It is time.

I love you all.
~jenn

http://www.jfmedicalfund.org

pictures...

2006-01-04T01:18:00.000-05:00

i have pictures now!! go check them out

http://www.flickr.com/photos/lilpumpkin

retrospect

2005-12-31T15:09:00.000-05:00

When I was little my grandma used to babysit me. For some reason, I would crawl under the table, with my white jacket on and sit there for hours. I know at some point, my grandmother would take a nap in the afternoon-and I would then tag along to take a nap. There is something kinda cute about a little kid just hanging out under the table-maybe I was making it like a jungle-even though I do not really remember for some reason, I can remember the touch of things. I remember the way the brown wood felt and the grooves. Touch...To know the feeling of touch is bizarre when I think about it.
But here I am years later, and there is this different touch that I have learned this year-or maybe have learned in an exaggerated version. I have been so touched by the outpouring of love, concern, prayers of all different kinds, expressions of luck, etc.
I can't feel this love in a tangible way but I know that it is so smooth and the comfort feels the way it did as I sat under the table.
I now wear a black jacket and some days I feel like a warrior that is screaming to be heard. I am trying to get newspapers involved or other people I know. I want people to learn about what the words "bone marrow transplant" means and to know that you have something called bone marrow. Because there are many people in their 20's that have never even heard that. I want to have more minorities go out there and donate their marrow. It is so awful to think of someone passing away, waiting for a transplant. I think it is appalling that gay men cannot get their bone marrow tested in 2005, and probably in 2006. The tests used for HIV are so advanced now that to me, this is ignorant and is needed to be changed.
I have been to quite a few places this year. I went with Judy and the boys (Christopher and Alexander) to Canada, Oklahoma and California. Judy has become such an important person in my life and the boys are like my brothers-I have moved in with Alison, which I know was really scary for the both of us and the best thing since both of us were in difficult living situations. We moved to an apartment in Hoboken, NJ, 3 blocks from the path, 15 minutes for me to get to school and 30-45 minutes for her in Times Square. Alison worked a full year at VH1 which was so amazing and has been working on so many amazing projects. 1 month after moving in together, I was rediagnosed with leukemia. Our world has not been shattered but it has been changed.
We have cried a lot in this place, we are preparing for a war. There have been times when I have wanted to leave and not make her have to go through this with me. It is so hard to be the person who loves someone who has to watch someone hooked up to wires, tubes, beeping, blood, etc. I remember December 4, 2003, when I had infiltrated lungs and I could not breathe and I was spitting up blood-and my heart was racing so fast and at that point, i kept fighting with no one, with myself-It was one of the most awful nights of my life-and I kept saying to myself "that is not the last time i am going to see my friend, but god if i am going to be a vegetable don't do this to me"..meanwhile they had also giving me something to make me urinate--it was quite a scene-alison saved my life that night-she called my aunt who came and took over-and before i know it, i was being rushed down to get x-rays of my lungs and i had this oxygen mask on my face and the doctor said i may need a respirator and my aunt said "SHE WILL NOT"..and I didn't..i fought-i stayed up all night-watching my oxygen...fighting-but as I was being wheeled back to the ICU unit, I saw my Mom, my Dad and my brother-and I felt so bad for what they have to go through-a child isn't supposed to be here, a sibling isn't supposed to see this-and I said to myself "i am going to do this for my mom, she is not going to watch her child die"...
it has been my thing to think no matter what happens, I want to live-
After my treatment was over in May 2004-my good friend, my sister's best friend took her own life-on June 14, 2004. Rebecca-she had this incurable disease that had relapsed-and I was just facing this fear of relapse-and I thought to myself "i don't know if i could do all the shit I am doing again"...and I was hysterical crying-it was so hard for me to get through this death-and understand.
But Rebecca is with me now and she is on my side and the second I found out, ironically for a second, I was okay because at least I knew. I was first told that my blood was clear and I had an auto immune disease, but then the final results came back and showed the leukemia lingering in me.
I know that my mom cries everyday because of this, I know that Alison has so many more fears than she will allow me to know. I know my sister hates being so far away in North Carolina. I know I can't see my niece that much for a little while and she doesn't understand but she hates when I lose my hair. I know many people don't know what to say to me and are scared of this. I know 2006 is going to be about healing and I am ready. I am ready for the chemo, the loss of hair, the nausea, the amazing drugs, all of it. Because it is a chance to live.
2005 has been amazing. It has had it's moments and I have cursed more at Buddha, god or whatever else in the shower but also tried everyday to believe I am going to fight this.
I am going to be working on some projects. Some to benefit my fund which I am switching over to another company but I will discuss that later. I will be focusing on leukemia in the most positive way I can and sometimes that is going to be negative and I am going to be angry but that is okay.
I had this psychiatrist that came to see me at Robert Wood Johnson in 2004 who told me that the leukemia is like a book at the library. It is on the shelf and it is there-but it can just be on the shelf.
I completely disagreed with him. Leukemia for me isn't just some book on the shelf-It is in me, it has changed my life and it can sometimes be like the number one song that is on repeat but it is never put on the shelf. But it is up to me with how I deal with it.
I have not been able to write much about it. I have drawn pictures.
I thank everyone who has rubbed my legs and to Youna for giving me lifetime supplies of Origins Products. Fret NOt is what I use on my legs in the hospital and that smell just calms me down.
it is snowing out. It is a beautiful day.
I think it is important to mention some important people/organizations that have touched me in the past month.
There is an organization called Smile Forever. Pat Gonnelli came and met with me and gave me a donation for me which was incredible and felt great. He said "do not use this towards medical bills". And I was so glad to have some money to use for other things because the fear of the bills that are going to be around me that are not for hospitals will be adding up also. His story is amazing and what he does is incredible. His wife passed away of breast cancer and he gives money to individuals living with disabilities or cancer that are in financial need. It is incredible to find people that give to this.
the website is http://www.smile-forever.org
Just recently I found about about a three/four year old boy named Aiden Berges. He is in need of a bone marrow transplant. I went to his website http://www.aidenschance.com
and I just started crying. He is also at Hackensack Hospital and this coming year we may be having a transplant together-
His family and friends have gotten over 1000 donors for the NAtional Marrow Donor Registry.
When people are concerned about not just giving me their HLA typing, I would like to share with them this. You have a possibility of giving a three year old a chance at life. Even if I find a match, I would like my friends or people I do not know to start setting up more bone marrow drives all over the country. If my story doesn't inspire you to do it, let this little kid.
There are people of all ages, sizes, races needing bone marrow transplants.

OH one more place, I would like to mention that another friend sent me a link to just yesterday that I think is great.
www.holeinthewallgang.org

i know this is more than a retrospective-
this is about me and my way to express this to whomever wants to read it. i believe in being honest. i believe in saying what i want to say. i know that sometimes this entries put me in tears as i write them but that's life.
here is to life and living.

HLA TYPING RESULTS

2005-12-30T12:23:00.000-05:00

i know that some of you have been emailing me and calling me to let me know that you have received your HLA results for me. I will be emailing people individually but if you read this before I do so, here is the info i got back from my nurse in Hackensack just this morning:
Hi Jenn -
I've been out sick, that's why its taken me so long to reply...
My fax number is 201-489-4610.
My mailing address is:
20 Prospect Ave, Ste 400
Hackensack, NJ 07601
(just make sure you put my name on the envelope somewhere)
As far as getting me your friends HLA typing - they can certainly fax it to
me - please make sure they put a face sheet addressed to me, and let me know
they are potential donors for you.
The financial forms can also be either faxed or mailed over to me, and I
will pass them on to Lisa, the insurance coordinator.
Thanks, and have a great new year!
Carolanne

Her name is Carolanne Carini-and it is for Hackensack University medical Center.
So you can fax or mail out the results-I would just make sure that either way, you put that you are potential donors for me.

After the new Year-i want to start some more bone marrow drives-and fundraising type things-so um.
contact me. with crazy ideas.
let's make this whole transplant thing a big party--

earphones, trees and joy

2005-12-25T12:35:00.000-05:00

i got some amazing presents and an amazing time ...
here are the bose quiet comfort 2 headphones...

i got a video for the phone-which is going to be great-because i am going to send the other video down to NC and hopefully my 4 year old niece will talk to me on the phone...
...i love presents :)

also, santa-should give jewish girls presents too! ha, a video by someone i've grown to love, sarah silverman--
enjoy.

give the jew girls toys

happy holidays...

xo

Lastnight

2005-12-22T14:53:00.000-05:00

Wow. people amaze me. thank you thank you for coming out lastnight. i was not able to attend this event but i have had so many people letting me know they had a really good time and it was a wonderful evening. chris held a little "conference" during his set about going out to donate marrow. I have heard that some people did not even know about bone marrow. So one new person is a potential for someone.
Over 80 people came out lastnight-in the cold, walked from different places. Chris' sister walked over 90 blocks!
but thank you. this is overwhelming for me and i can't even explain what it feels liek to know that people came to this from all over. from two of my best friends driving from connecticut and boston, ma to the walkers in new york.
i have to thank the artists who people really loved and put on this great show.
but most of all, chris garneau for setting this whole thing up.

okay now it is back to papers and back to watching about this strike hopefully being over.

xo
jenn

oh baby baby

2005-12-21T20:03:00.000-05:00

oh gosh-this strike-
i hope people still show up tonight at the benefit.
i do not think i will be going because it is probably too dangerous and it is late. i have had to do a lot of running around lately and i've been up at all hours of the night, writing papers.
this week has been crazy.
today, i had to go to hackensack hospital because ....they needed 6 tubes of blood for me.
ThE REASON??
there are some potential donors that are willing to go in and see if they can be my matches-so they will need to get more of a high resolution testing for this--THIS IS AMAZING NEWS! It is another step...we're getting there.
while i was at hackensack today, i was being my charismatic self and started talking to the male receptionist there-who is really cool-and after telling him i would kill him if i had to hospitalized because he was making me get my vitals...i ended up finding he is a transplant survivor-he had an autologous transplant which is a little different because it is the person's own cells verse the type i am having an allogenic which is someone else's. But it was still really inspiring to see him looking so great-and being 5 years in remission. he had lymphoma...
So after the blood, i had to go to the dentist because iv'e been having some pain-it almost seemed like nerve damage-but it was from my bite being off-the reason: when i got my tooth filling last week-because i was numb, i could not tell it was off and was not biting down as aggressively because of this also-so in a few days, it should be feeling better...
i have more papers to write-and more research to do-
i am tired-
i really hope people come tonight to the show-
it is at the living room at 154 ludlow between stanton and rivington-
it starts at 10pm and is $20.00
chris, i really thank you for putting this together...

in the village voice-

2005-12-18T17:48:00.000-05:00

a lil blurb that i just came across for the benefit concert-i think it is so great

benefit show blurb in village voice

ginger ale, a fake christmas tree and some hope

2005-12-15T23:28:00.000-05:00

it is almost 1130 pm and i have a paper due tomorrow that i have barely begun. i am sitting in my apt. in my living room. looking at my fake tree. this is the first year, i have ever had a fake tree. due to my microbial diet, i am not allowed to have anything fresh near me because of bacteria. that includes flowers and also we thought a tree might be dangerous and bacteria filled. we did get soem awesome ornaments though. we have sock monkey-a boy and a girl...ralphie from a christmas story dressed up in a pink bunny rabbit..a squirrel...and we also have a ball that lights up and says "merry f**king christmas". we got it at urban outfitters-it's called a ball of cheer...i put on some christmas music tonight. it is such a weird holiday season.
i actually went to see my grandfather in the hospital tonight and i secretly think it is really hard for him to see me. i can tell even in all the pain he is in, i know that he hates what i have to go through-usually when i speak with him or see him, he begins to cry...this is a very strong willed man that has a bark that is bigger than his bite.. i wore a mask and i have a hat that i wear that is like elmer fudd so i looked completely crazy but i really wanted to at least say "hi" to my grandmother-
i was scared but i thought it was necessary i do it...hopefully in the next week, he will be transferred to helen hayes rehabilitation center.
we are still in the process of looking for a donor-
okay i think this is procrastination at this point..back to work.
xo

whoa it's cold outside

2005-12-14T17:38:00.000-05:00

i need to work on my papers tonight. but i wanted to quickly post about this past week, especially yesterday.
yesterday i went to hackensack university medical center for a bone marrow transplant class. it was about 3-4 hours long and then i met with the social worker there for about another 30-45 minutes. there were four sections to the class.
first, the nurse practitioner talked and gave an overview of what would happen and how necessary it is, once discharged from the hospital to have a caretaker with you everyday all the time for at least the first 30 days out of the hospital. Hackensack likes to try to keep you out of the hospital so there are many things that may have to be done at home. For example, if I need to ivs, a home care nurse may come and teach me and my caretaker how to give myself ivs. It is so weird to think of my apartment becoming similar to a hospital room. This also immediately made me realize how costly this potentially could be. Most of the time, a home care nurse even to come to teach things is expensive.
But there are a lot of other things and this is going to be quite a situation. I feel somewhat ready if this is what I must do. But i am scared. i want to get through the holidays and my papers and focus.
Then there was a nutritionist that came into speak about all the foods you are and are not allowed to have. This diet is called a low microbial diet or nutropenic (sp?) which I am already on pretty much.
After that a pharmacist came in quickly and discussed the different phasing of drugs and how there will be lots of drugs. When I am discharged from teh hospital, I will be on about 12 different drugs. And this will change eventually. But also they will do lots of tests to make sure I am getting the right amount or not too much or too little.
After that the social worker came in to talk. She talked about the social/emotional and financial part. It was a really great class and some things were hard to swallow but many were repeated. However it was good to meet the team and to have some questions answered.
I am looking into starting a new way to collect funds that will actually be tax deductible now but will not go to me directly. This will be good in a lot of ways but also somewhat difficult. This money that would be donated to this organization would pay for only my medical bills from hackensack hospital and the bone marrow transplant. The only issue I have with this is I know there are going to be a lot of costs that are not necessarily hospital bills that I will need to deal with throughout the year. So I need to figure out a way to have this fund set up and people can either donate to the fund for specific hospital bills or still give me money but it is not tax deductible and will go towards medical expenses but also personal expenses. If anyone has a good idea of how to do that, please let me know. As of now, all donations given to me are considered gifts and the reason for that is to keep my income low so I am able to still get disability.
The costs of this transplant are going to be beyond what I know and I have to decide what battles to fight-so I might just have to hope we can get through that part.
the holidays are coming up and i am very excited...
i need to go do work.
xo

a mass email i sent out nov. 15th

2005-12-11T23:55:00.000-05:00

this is an email i sent out to people on my email list, that i think is really important and gives people more of an understanding about what will be happening to me.
since, i have written this, we have had two successful bone marrow drives that have brought in over 100 new donors. that is a start.

Hello,
I am trying to put out an email once a week with what is going on with me.
First of all, I might do this every email, but I really need to thank everyone for being so supportive and responsive. At 26 to have something as intense as this happen to you, you really see the beauty in people. And you also find out other people's stories that are struggling. And you just develop more of a deeper passion for this life, but not only life but for human kindness.

Speaking of human kindess, Chris Garneau is putting together a benefit concert at the Living Room in New York City.
Chris Garneau has brought together Duncan Sheik and Jenny Owen Youngs to play a show with him. Duncan will be headlining the show. This is an Elliott Smith type tribute concert where the musicians will do songs by Elliott Smith and then some of their own stuff. Elliott Smith was an amazing musician, who unfortunately took his life on October 16,2003-I believe. Please feel free to check out these musicians at their own websites:
http://www.chrisgarneau.com
http://www.duncansheik.com
http://www.jennyowenyoungs.com

I will update when I know more information. All of these artists also are on myspace so you can always check them out there too.
The address for the Living Room:
54 LUDLOW STREET B/T STANTON AND RIVINGTON
TICKETS SOLD AT LIVINGROOMNY.COM

I have known Chris for so many years and he has been such an important person in my life. My first round of treatment and once again, he spends hours with me and doesn't mind just watching me sleep. He is an amazing musician and if you've never had the chance to see him live this is a great time to do it.

----
This past week has been difficult but it is over and some really good things came from it. I am transferring my bone marrow tranplant from Robert Wood Johnson University to Hackensack Medical University. I went for a consultation on Thursday and I felt confident in Dr. Scott Rowley. I get to keeping seeing my normal "leukemia" doctor, Dr. Dale Schaar, at the Cancer Institute until I need to go in for the transplant. Hackensack is also great because it is closer for some people and the train ride there is not that bad. I saw the floor I would be on. I asked if I could see it. I just wanted to be a little familiar with where I would be. And I just stood there in the room, thinking "shit I have to be hooked up to all this stuff again". Being in the hospital for weeks at a time is such a strange thing. After a few weeks of low socialization, you begin to not want to leave. The first time I was able to leave when I was first diagnosed, and they took all the ivs out of me and I did not have to walk around with the pole, I started shaking. I was so terrified of what was out there. I was scared of not having my blood pressure and temperature taken every 2 hours. Now I can't imagine another 3-5 weeks in the hospital.

I think I am going to take a moment to explain what is going to happen to me because maybe some of you would like to know:
Right now, they will have to start the process of looking for a match for me. Patient and donors must have a similar "tissue type" in order for this transplant to be successful. Genetic markers on the surface of our cells define each person's tissue type. On the surface of most of our cells lie sets of proteins. Like a fingerprint, these proteins enable our immune system to distinguish between cells that belong in our body and cells that do not. If immune system cells encounter a cell with the wrong "fingerprint", they orchestrate an immune system attck to destroy it. At least five different proteins, called Human Leukocyte Antigens (HLA), on the surface of the white cells are believed to play an important role in stem cell transplantation. There are new high resolution DNA-based tests, called allele level typing, that can distinguish between hundreds of different genes that generate HLA proteins on the cell surface. While this allele typing is more precise, it is of course more time consuming and costly. So of course, this must be used since my brother and sister are not matches. So hopefully through this search, a donor will be found for me.
This search will take 8-12 weeks. I have already been knowing this for 8 weeks but due to the insurance complications with Robert Wood a true search has NEVER been under way. Oh but I must keep all my anger towards fighting this disease.
After a match is found, I usually have to do some preparation type exams. I need to get a dental exam, gynecological exam, some psychiatric help, and then within 30 days of the transplant I have to get the following exams: audiogram(hearing test), blood tests, bone marrow biopsy, bone scan, chest x-ray, cardiac (MUGA) scan, CAT Scan, EKG, echocardiogram, MRI, Pulmonary Function Test and of course a Urinalysis. I am admitted 7 days before the transfusion. The day of admissioin, I will go under general anesthesia and get a Hickman Catheter inserted into a major artery for chemo, iv, transfusions-I will also start chemotherapy at about 6pm. The first chemo I will get is called Busulfan. They will also give me medication to prevent seizures because this is one of the side effects of this chemo. I will have this chemo every 6 hours, 16 times. It will take 4 days. After those 4 amazing days of poison in my body, I will then take some cytoxan for 2 days. During that time, they will monitor my urine very carefully because it is some kind of side effect-blood in urine. During this time of the 6 days of chemo, I will also get rabbit serum-I hope I am spelling that correctly. Then after 6 days, I get one day of rest. The side effects of these chemo meds are of course, loss of hair, dizziness, nausea, possibilities of infections, etc. On the 8th day of my hospital stay I will get the transplant. -This is called Day 0. I start again. I can get the blood DNA of a male or female, it can change my blood type, those things do not matter. I am then put on medications and also after a certain amount of time, my counts will be so far down, I will need blood and platelet transfusions. After the transplant, we have to also watch for Graft versus Host Disease (GVHD). GVHD occurs in about 50% of patients receiving allogenic HLA-identical tranplants (that's what i am having). GVHD is an immunological process in which white cells contained in the donor marrow infusion recognize certain "target organs" in the recipient (host) such as the skin, liver, and inflammation of any or all of these tissues. The treatment of Acute GVHD may include high-dose of steroids or the use of an antibody directed against the cells that cause GVHD.

So far that is about my understanding. I know that might be a lot to digest but I feel sometimes people make up in their head the treatment or don't really know what specificallly I will be doing so I think this is the best way to explain it. I am a firm believer for me to be open and honest with what is going on in my medical journey and to allow as many people to listen to my doctor that are in the room.

So right now, I am at my apt. I will not need chemotherapy or to be hospitalized until the transplant unless something happens-where my counts go down very low or leukemia comes back full blown.

2005-12-11T23:36:00.000-05:00

aww..this puggle needs me and i need him...i can't have animals for over a year, i want a puggle...

a change

2005-12-11T22:59:00.000-05:00

the diary on my page was amazing, but it was too complicated. I had to have alison always do things for me, but I would prefer to update whenever I would like. I would also like to post most of my current mass emails so if you are not on my email list, you can come here and get the most up to date info.