day +24

hello
i can't' believe it has been so long since i've written.
so i've been going to the doctor on a reg. basis, about 2-3 times a week.
ii went on thursday and my counts have continued to increase. SO no transfusions for now.
I have a really painful shoulder/neck, on my right side-so i needed to get an ultra sound to make sure i did not have a clot. and thankfully i didn't or they would have to take out my port. i have this port with two lines coming out of a main artery to get blood and to also infuse. Since, I don't have many good veins, i was happy to know that i did not need it taken out and be poked every week or twice a week.
i have been getting these bumps on my fingers-only the inside by the palms. i keep getting more so i went to the doctor yesterday, on friday to show her, and she said "this is something that shows up more in Chronic GVHD, but it can't be that because you are not passed day +100". she gave me some cream to put on my hands. I don't know if i should call when I notice anything different, even the littlest thing or it is okay for some things.
I usually call right away.
my prograf (a medication that helps against gvhd) has been lowered again because my blood levels were still high.
BUt all in all, still doing pretty well. I am fearful of GVHD, but know it will be a good thing, although scary.

other than that, i have been focusing on the silent auction on may 17th. although i am not able to attend, i am trying to make a video for it and i am also just trying to put things together. I handle most of my finances and saw today an Explanation of Benefits from Aetna that showed Robert Wood Johnson may bill me about $10,000. We will see what happens with that. In some ways, I am relieved because when this was first showing up online Robert wood was trying to get 400,000 for my stay there during my Reinduction Chemo, but the negotiated rate was 96,000. So that was better, but still very expensive. I have not received the bill from Robert Wood Johnson, but we'll see.

My mom has been making me dinner almost every night but on Thursday night, my best friend Jenna came over. I decided I was going to cook-mexican theme. I made guacamole, chicken and steak fajitas, corn on the cob, beans with rice...i had never made mexican before. it turned out delicious.

My dad installed our air conditioner this week. That was a two day situation because it is massive and my apartment building does not have a level ledge so he had to pick up some more equipment. He also went to pick it up and they would not let him so the store had to deliver it here. He's been running around a lot for me lately and been getting some really great things for the silent auction.

Alison is making me breakfast right now and I have to go take my pills soon. I just could not believe I had not written in so long.

I stayed up really late lastnight. i got into this marathon on top chef on Bravo-and i was really into it.

I've been hanging out with friends...
oh yeah, tshirts are here-if you'd like to buy one for $15.00
let me know.
you can see them on the website.
http://www.jfmedicalfund.org

i will try to write more and consistently when i am doing well...

love
jenn

i am home!

today is day +15.
i was able to go home because my wbc is 1.0.
and i am doing really well. i mean, there are a few complications with liver enzymes but hopefully that will be figured out.
today, i had two people visit me that were really amazing. the little boy aiden that i follow who got a bone marrow transplant in the middle of february, his parents came by before i was leaving. they gave me this adorable picture of aiden and then a very generous contribution. i was overwhelmed, and i cannot say thank you enough.
today was a really beautiful day out but i am really overwhelmed.
it was nice to be home but hoboken is loud. and from going to a room where you could not hear anything to the noise of all the people is quite a change and living on the third floor.
i go to the clinic tomorrow morning at 8:30am.
i was really excited when alison walked through the door today from work. i know that she felt "jenn's home" because i had stuff all over the place.
my mom made a home cooked meal and i ate way too much-so i am a stuffed cat like garfield.
i am trying to learn my medications and it is quite complicated. just timing and all the different ones.
the hardest part for me right now is my energy level. i keep thinking of all these things i have to do but it just seems so difficult to get off the couch or something.
i am excited to lay in my own bed tonight.
hopefully i will fall asleep.
it feels good to be home.
i still have a lot of days until day +100. july 14th --but right now it is more one day at a time.
we have to buy an air conditioner and an air purifier. and to find some noise reduction.
thank you everybody.
alison has been working really hard on the silent auction. things are coming together really nicely. hopefully we will have a good turn out.
good night for now.
xo

day+8

so it is day plus 8 and this is the critical time-well starting day 5-whenever i start to engraft-
so far, i havenot had any bad mouth sores-and i am doing really well for what i am doing through.
it sometimes feels funny saying "i'm doing good" because of the vomiting and the tiredness, but in general, my doctor told me it looks like i will survive through this part-quite a tact-but he made me laugh
we had been having some issues with my blood levels and prograf. my blood levels were too high but they had to lessen my dose by about half. so now it's better.
i've been getting transfusions-thank you for donating. i think i still need more platelet transfusions if you'd like to come and donate.
i know people are getting sick and stuff now.
i drew a bunny with an ATG necklace on hm-that i will put up and throw things at when i am mad. the ATG, this rabbit blood that i got-or serum really was awful for me. it was the worst so far. as far as experiences go here...but sunday is easter, so saturday night i'm dying easter eggs..yes!
the food is okay. i am not typically in the mood to eat but i try to eat every meal in another way to avoid mucusitis. i have not had any fevers besides a few at the beginning but everything has come back negative.
let's jsut hope things stay this way for a a little bit longer.
the doctor said that if things just keep going according to plan, i will look at getting out of here next week.
hackensack has been really great. the nursing staff and doctors are realy good..and i trust them. i did ask for platelets today though because i found them necessary.
my mom has been here all week.
thank god for her.
my best friend jenna is coming tonight really late and will be here for a few hours tomorrow.
oh yeah
May 17th, we are having a silent auction at the colonial inn in norwood, nj.
we are having invitations made so if you know anyone that would be interested in getting an invitation, please email me with the address.
there is an RSVP by may 10th and a charge of $30 to get in for the food and charge of the place.
it should be a really great evening.
we have some pretty good things to auction.
there is more info on my website.

i think i'm going to take a sleeping pill and try to get to bed.
i hope everything is good and everyone is doing well.
i am checking my email a lil more now. at first i really wasn't dealing with much
each day is its own and there are days, i might do many things and some days i just don't feel like being on the phone or any technology.

but i enjoy the emails and if i don't get back right away, i will get back as soon as i can
love
jenn

day+4

Today is day +4 and I am sitting up and I actually did a rough draft of a lil surprise video I am making for the silent auction since I can’t be there.
WOW. This is rough, but manageable. My brain is mostly mushy from chemo and drugs, so I find myself backspacing and needing to slow down. I’m beginning to realize that it is okay to be in bed sometimes.
I mean, most of the time. I am an avid user of ativan for my nauseau. Today, I was drugged for my platelet transfusion so I slept a lot of the morning. Actually I am sleeping a lot. This morning. I tried to do some bill stuff or esterday morning. See I can’t remember. I am still trying to eat things. I know that Alison is taking pictures and helping me with my blog because I am a lil whacky right now.
Sometimes the steroids really get to me. I called my mom to inform, I had asked her to buy me 8 batteries, last week. 4AA and 4AAA, istead she goes to Costco and buys 36 AA which I just figured out when I needed the AAA so I called her to yell at her for that and then demand a receipt. It is funny when I look back. Then I needed a form that my dad took. And I called him up to yell at him to never take things out of my room unless I know he is. Ahahahah. Meanwhile, he is at a real estate open house, and barely gets steroids anyway, so probably thinks I’m being a real brat. AWW..my poor poor mind, I want it back.
All the meds and liquids they have me on. Really do a toll on you. On me.
The silent auction is coming together nicely. I assume more on that this week. I sorta quit after ATG-that rabbit stuff really messed with me. I hate RABBITs. Of course, it’s easter..
It looked like I had got lost in the ocean my eyes were so red. I was so sick…I even said to my mom “are you nervous” and she said “yes”..and then I got mad about that…hahaha
But only bc I am scared.
The next week and half will be really hard.
Well definitely more than that, but I know I have to focus, on little steps.
I got a gift tower basket -from the processing dept. thank you-I don’t know who that is.
I love presents☺
I really can’t get too technical right now. My brain isn’t there-like with all the specicifics of things-but I just wanted to write because I felt that I could and that is a major accomplishment for me right now…
I will hopefully write soon
Love
jenn

Day 1 is here..

So last night was Jennifer's BMT and the day was very long. Jenn was nervous, anxious, and scared. She took her medicines, ate a little lunch, and mostly kept to herself. Her best friends Jenna and Erica were there along with her mother, father, and I. Of course there were many laughs during the day and I know Jenn was happy everyone was there. We thought the transplant would be around 4 or 5pm, but it all happened at 7:45pm. Her doctor brought in the bag of cells and it looked like a normal blood transfusion. Everyone was very quiet and it was a very surreal moment and I'm sure a million thoughts were going through everyones minds. The entire transfusion lasted about 2 hours and Jenn slept a little bit through it since she was heavily medicated in case she had an allergic reaction. Thankfully she didn't. After she was transfused her nurse gave her medicine to make her use the bathroom since she has been full of liquids. It is healthy to flush the system out and not have any trouble with her lungs so this meant an all night party in room 8907. Well, no but Jenn was up most of the night in a lot of pain and having to use the bathroom every 10 minutes or so for a few hours. It was hard for her to walk and her knees and back hurt her. She managed to snooze on and off but was woken up again for vitals and morning medicine by her day nurse.

The day was slow and Jennifer was in a lot of pain. It is mostly from the effects of chemo and the transplant. Sore joints, feeling nauseous and getting sick a lot. She was exhausted from not getting any sleep but I could tell she was frustrated. The pictures below are a bit fuzzy, but I didn't want to use the flash on some of them since Jenn was feeling sick. The photos show the BMT, a photo of Jenna, Erica, and Jenn's father in the background. Another photo is Jenn and I snoozing away, and more BMT snapshots.

It was an incredible experience and although the next few weeks will be rough and perhaps a little scary, I have a lot of hope and love for Jennifer. She is just so brave and incredible.

Day 0

Today is considered Day 0 for Jenn..
She will receive her BMT sometime in the afternoon I believe. Then it is time to count to +100 days. I'm a little nervous, but mostly just excited I think. I'm not sure how they are doing the procedure, but I'm assuming it will be through her IV tubes. She has been so sick the past few days because of all the medicines and side effects. I have been talking to alot of people through the Leukemia newsgroups I belong to and they say all this is common and it just blows my mind how someone could go through this. She is just a very strong and determined person.

I was very happy when my phone yesterday and it was her calling to see how I am doing and she was telling me she missed me. We talked for about 2 minutes but it felt so good to hear her voice. She didn't get out of bed all day on Monday and to hear that she is at least walking to the bathroom is huge. It's been hard for her to talk on the phone so those who have been leaving messages please don't take it personal..believe me..she loves you all :)

Okay, it is time I get myself together and go over to the hospital around noon. I usually wait till we get our mail because Jenn just loves to get mail even though lately it is hospital bills and insurance junkage galore.

Until Thursday..
Thank you for reading..

PS - I hope you have been checking out Jenn's website and the details for the silent auction/dinner event in May, please read: http://www.jfmedicalfund.org

Float On..

It's Sunday evening and I am back from the hospital. I drove there Friday night to spend the weekend with Jenn in her cozy studio..eh hospital room. Friday night was nice and sorta calming. Jenn took her bucket o' pills, received her chemo treatment and showed me her brand new computer which of course I fell in love with. Friday night was sorta busy but we managed to eat dinner and Jenn fell asleep fairly early but was up throughout the night having to run back and forth to the bathroom and get vitals taken.

Saturday morning she was up at 6am which sorta shocked me. I was exhausted from my week and realized how I needed to get in hospital/caretaker mode..fast. Jenn went into the exercise room while I slept for another 30 minutes. She biked about 3 miles and then walked about half a mile around the floor. Somehow she has come up with the equation that 22 laps around the floor equals a mile and she did half that..no clue, but I will just let her have that one.

Late morning her folks came by and her dad & I drove out to Norwood to see the Colonial Inn, which is where we are having the silent auction and dinner on May 17th(mark yr calendar). We arranged some final details and wrote up a little dinner menu which I'm not sure I am thrilled with yet. I think I need to make some calls this week for that. Afterwards he took me out for lunch at this great Greek joint Jenn has told me about a million times but we never had the chance to go. We moved onto some shops in Norwood, bought Jenn her Gatorade, and then headed back to the hospital. Erica was there and I was happy to see her and as always enjoyed listening to stories about her job at the cafe. Eventually Jenn's parents left and then Erica headed back to the city. Jenn was sorta napping from some of the meds she was taking. She was getting nervous about the heavy amount of steroids she was going to be getting at 10:30pm. There are so many medications that she has been taking to prepare for this transplant, I am still amazed how wonderful she has been doing. This is my inspiration.

So finally it was time to take the pills and although Jenn was a bit nervous she popped them in her mouth and commented on how they tasted like shit, haha. She was already very tired and after she took the pills, I just put on some TV and rubbed her legs till she passed out. I was sorta waiting for her to get up and maybe have some type of emotional reaction but she slept for about an hour and then had to use the bathroom. I managed to fall asleep but would wake up when I heard her which was maybe once an hour or so. They have also begun the process of hydrating her and trying to flush out her system a lot even though she had a few chemo treatments left.

Sunday-Sunday-Sunday. Jenn slept in later than usual and I woke up thinking it was 10am but it was a little after 7am. The clocks were moved fwd an hour, but for some reason I felt as if I had gotten a lot of rest, ehh. Being in a hospital room makes you forget about time, very quickly. Jenn woke up a little later, and we went for a morning walk around the floor and then we had some breakfast and went over the details for the invites that I need to design and print up sometime this week *sigh*. There is so much to do with the May event, but I feel like we have made so much progress from 2 weeks ago. I am hoping Jenn stays well enough to continue her amazing tactics with this event, but I know the days will get harder and she will be sleeping and feeling crappy a lot.

Today she was finishing up her final chemo treatments, getting more steroids, anti-nausea, anti-fungal and viral meds, and probably another bucket of pills that she will be taking. She took a pill called Decadron and then she will also take something called ATG and this medication modifies your immune system. It's mixture of antibodies that recognizes key receptors on T-cells (part of the immune system, which are responsible for attacking and rejecting foreign substances within the body) ATG destroys these T-cells and decreases the risk of rejection. Whooosh, so much to remember. This is sorta scary because it can cause strange feverish side effects, but as usual we are all hoping that Jenn continues onward. They give a lot of these meds at night when patients are just about to go to sleep.

Saying good-bye to Jenn is never easy, but I know she is being taken care of and on her way towards this transplant in a few days. She is being so positive and taking such good care of herself. She is walking and trying to keep her strength. She told me today that her doctor said that exercising the legs and mind are the most important things to be doing. She is trying to eat 3 solid meals a day and last night she woke up and nibbled on a Kit-Kat at like 3am.

Please keep reading, thank you.

Love,
Alison

PS - below are some pics - Jenn having chemo and chatting on the phone, the views from her room, and there is a blood drive tomorrow in her hometown in norwood, nj.