it is about time.

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

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

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

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

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

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

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

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

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