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

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

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.

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