retrospect

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

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

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

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

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-

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

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

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

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.

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

a change

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.