from alison..

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

this made me cry

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

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

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----

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.
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i have been watching this new show on the discovery channel at 6 and 630 called the cash cab. i love it.
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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

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.

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

Bergen Record Article Today

congress..politics

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

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

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.

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.

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