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

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

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

as my niece says...

"aunt jenn is bald!!!"




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

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

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

have a good day
love a lot....

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

a mass email i am sending out

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

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

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

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

I'm going to watch jeopardy.

Love
jenn

sunday night superbowl

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

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

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

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

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

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

painkillers,knee aches

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

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

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

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

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

COUNTS GO UP!!!!