Day +84

i had indian food lastnight!...the doctor said i could eat take out. and i said i wanted indian, she said that was too spicy for my stomach but i did it. it's all i have wanted...it was pretty good. i was a lil worried but it was delicious. it seemed like some stepping stone.
i had a list of questions last time, on monday when i went:
1. can i travel by plane? yes, but people can have colds and you are in a confined area
2. can i go away like road trips? yes
3. can i go in water and swim? hmm..not yet, let's wait, no public pools, lakes,
4. what about oceans? hmm..not yet, you'e not at day 100 maybe in 6 months, (mom interjects, there are sharks in oceans) I LOVE SHARKS and want to swim with them. -doctor looks at me like i'm crazy.
5. so next summer, i can swim in the ocean? yeah
6. i need to get myself a pool
7. can i have a puppy? um..not really. too much for you right now, adopt an older one (i want a puggle and i will wait..i'm not even allowd in my apt)
8. when can i go back to school? if you continue to do this well, in september.
9. when can i eat take out? you can eat it now. Wait, what do YOU want?
10. when can i go to a restaurant? um, i would wait until day 100
11. when can i go to a party? the doctor's reply was "at parties there are smoke and lots of people and drinking..>" i was like "but i want to go to a party on a roof after day 100" -she said "okay you can go, but no drinking" ..i said "i don't need alcohol, i have ativan". hahaha

so my counts are doing okay-my platelets are still somewhat low at 89-they dropped down. my eosiniphils are high at 6.0.
so this is a sign that they graft is working, with some gvhd. i am still not taking any steroids for it thank god.
i am a monster sometimes without the steroids.
I have to go fill out the form for financial aid now in the case that i do go back to school. i think i will try to take mostly online classes.
erica came over monday night-and ate some dinner with us. then chris came over yesterday. he brought me presents. and this really beautiful card from his mom. he gave me a live recording of the benefit show. of only him. It sounded really great.

This girl that I met through reading a local newspaper Jamie is having a bone marrow transplant, so I am thinking of her and hoping that everything goes well.

This weekend is Alison's birthday and we are going to her parents' because I can't really do much. I wish I could do more but for now, this has to be good enough.

I will write more soon.
love
jenn

from Jenna-July 13th.

Jenna and Beissel's Birthday Bash!
When: July 13 at 1pm
What: There will be a keg and lots of extra beer on reserve.
Feel free to bring whatever else your heart desires.
We're asking for $5 a cup
Beer Pong Tourney: $2 entry
Poker Tourney: Buy in to be determined day of, winner takes half.
Jell-O Shots: $1
Where: Jenna's Place - 428 Center St. Wallingford, CT 06492
Any Questions call Jenna: 201-310-8410
Why: Do we need an excuse to have a party?
ALL MONEY RAISED GOES TO JENNIFER...DONATIONS WELCOME!

day +67

today is beautiful outside.
alison and i were up kinda early. well she is was up a lot earlier than i was cleaning the bathroom. then we went to target to get some things we needed, like a new vaccuum for hardwood floors-because according to alison the shark one we had exploded with dust all over the place the other day when i was out. thank god i was out with my mom, that would have stunk for me. we also needed to get a new shower mat and bathroom floor mat.
it was cleaning morning/afternoon-we got the bissel flip it. that is both dry and wet, so of course, i needed to play with this. so after alison dusted the rooms and cleaned them, i went in with my bissell flip it and first used the dry part and then mopped the floors. it was fun at first, and then it was just like cleaning-boring.
but i am not sure if i am supposed to be doing something like that, but i figure i need to tkae some chances now and again, and just be somewhat productive. my mom and alison do so much for me when it comes to cleaning. my mom has to go the laundry mat every week-once a week-because we don't have a washer or dryer in our building and take everything-comforter, sheets, towels, my clothes, and sometimes i throw in alison's clothes because i know it's such a pain in the ass for her to get to the laundry mat. now i have made it so my mom brings them back unfolded and lets me help her fold them because i feel somewhat bad. i went to the laundry mat with her once, bu ti have to sit in there with the mask on and it was just really awful and hot. thank god we have this cart that she brings with her, but still it is a lot for one person to do and she has done it every week. i thought about getting a laundry delivery service but it would be so expensive and we can't really afford that.
after our cleaning, our apt. smells so delicious-and the windows are open, i made a really good salad-with pears, goat cheese, onions, nuts-(i have to cook the onions and nuts-i carmelize them), cucumbers and spring mix that i have to wash very good. and then i put goddess dressing on it. it was yummy. then i had a clementine. i love clementines.
after that alison and i went out to do some errands. she had to go to the bank and then we went to a few stores. we went to this place called good kleen fun-there was this shirt there that is for pregnant ladies, but i bought, well actually alison bought it for me, it had a cigarette, a martini and sushi on it and then it had the not allowed signs crossing them out--that is completely my life now. i don't really smoke and drink anyway, but i miss sushi and take out. she also bought me this new sun block california baby, and i also got another one in target today. my skin is so sensitive to the sunblock that i think it is making my face break out, so we are trying a few different ones. i guess we can never have enough sunblock. then after that store we went to a store called "down to earth", which had amazing clothese in it, but a tshirt was $80, i had my mask on and i think sometimes i forget that people can hear me just fine and i said to alison "this store isn't very down to earth"..haha. we left that store-then we went by footlocker and another shoe store. i need new walking sneakers and alison has been looking for new shoes too but i didn't really see anything. then alison went to get a pedicure and i came home, here.
i think tonight, i am going to make a turkey with cranberry apple stuffing for dinner with some butternut squash and corn on the cob. i had to go to the dentist because i cracked my tooth in my sleep the other night in northvale, nj. my dentist is amazing, he has not charged me a cent. i told him i was going to make him go poor-he told me he already has a wife and kids. :)
but afterwards, we stopped in westwood, nj at the trader joe's and got some things and lots of frozen things which are good for me because sometimes i am just really picky with eating, so usually alison and my mom will then tell me to figure it out on my own.
i have slowly watched them tell me "no" more lately and as much as this should be fine, it really pisses me off.
my hair is starting to grow back. two weeks ago, i had one of those issues where i got out of the shower and started crying to alison that my hair was never growing back and my platelets were going down. i was just having a moment of hopelessness-and then boom, it all of a sudden just happens.
so tomorrow is a doctor's appt.
i can't wait to get to day 100.
i really miss barbeques.
i hope everyone is doing well.
oh yeah, yesterday, alison and i went to pearl paint because i wanted to start drawing again.
i just sat at teh desk and drew for hours-and made silly pictures-it felt good.
xoxo

update

hello,
so this week has been pretty good. i had a doctors appt on tuesday-my counts are doing "okay". my hemoglobin and white blood cells are in normal range, however my platelets are low. not low for transfusions yet, but hopefully they will come back on their own. once again, dr. rowley talked about this possibly being the GVHD that I am having. He noticed my face was red, my skin was red which I don't see nor does anyone else, but he knows what to look for. If it stays the way it is I will not have to be medicated. He said it coudl go away on its own. He also put me on a beta blocker because my heart rate is sorta fast. it is a lot mroe fast when i am there and i tried to tell him that but he still put me on the beta blocker.
at night when i was home i took it and it drastically decreased my heart rate and my blood pressure but in my opinion it was going too low. my heart rate was 62 beats per minute and my blood pressure was around 100 or 90/50. i called the next day and asked to decrease the dosage because I felt that this was too drastic of a decline. so they cut my dosage in half.
I have been vomiting a little bit this week again, which hasn't haappened in a while. I do not know if it is the new medication or GVHD. It has been nothing extreme, only 2 times, for one day, but nausea is back a little more.
It is saturday morning and i have to get myself together. i like to go out earlier when less people are out. i have to go eat breakfast and take my 12 pills for the morning. my magnesium was low this time so now i am taking 8 magnesium pills a day.
i am really missing indian food. i can't wait until i can even get take out from our fav. lil indian restaurant in hoboken.
well since i am slow at getting ready and i need to be ready in 40 minutes i should get going. i will write more later

love

Help someone out who is still in search of a Bone Marrow Donor

Doria Roberts (a musician) posted this tonight and I thought it was really great. I had actually read about this girl a few months ago when I was in the midst of my chemo and I was hoping she would find a donor. Unfortunately, she has not. I know in Bergenfield, NJ, there is a massive amount of philipinos. I can set up a drive and help out but there is no way I can be present right now. I am not allowed to be around big groups of people. I know I have asked a lot of people recently for things and favors and everyone has been really awesome. But this is something that is really important to me. I believe that everyone that is capable of a BMT should be able to find a match. This is exactly the way Nelly's sister passed away. WAITING FOR A DONOR.
Let me just tell you this situation real quick. This girl is in CA, who is 33 years old who is looking for a bone marrow donor. she is philipino. So most likely her donor will need to be at least half philipino. She has been looking for a donor since December-and there has been no luck. I really would encourage anyone to go out there and donate but I think setting up a drive and trying to somehow get this knowledge to Bergenfield, is what I will try to do. I am not sure if someone has already done this but I think it is the best I can do for someone else right now. If anyone has any ideas, please let me know. I am going to start working on this on Monday.

Here is what Doria Roberts wrote today:
Bone Marrow Donors of Color needed (repost - sort of)
Body: Doria here. I'm running late for soundcheck but something was brought to my attention and I wanted to post this before I left. Please forgive all typos...

A friend of mine, Sara Weaver, died in 2002 from complications associated with her bone marrow transplant which she needed when diagnosed with Leukemia. She was 32. The anniversary of her passing is tomorrow I believe.

One of her final wishes was to encourage people of color to donate bone marrow b/c there are so few in the registry.

A bulletin was sent out today about a Filipino woman who needs bone marrow as well. The donor has to be of Filipino descent and there are few options available to her.

This is the fourth young person I've heard about who needs bone marrow and it's troubling.

No one likes to think of their own mortality but just take a moment and imagine if this were you and you had to rely on strangers to save your life. How desperate and alone you might feel. How surreal and precious everyday would seem.

We repost so many things here and I think this one is worthy of everyone's time. You never know, it might work. She might get what she needs.

So please send this message out in your own words, with your own thoughts. However small. Just sending some luck her way might help.

You can find her story here: http://www.myspace.com/bonemarrowdonor

You can find my friend Sara's story here: http://www.goswisher.com

Read Sara's journal, read her guest book, make a donation to the fund if you can. Stay awhile. She was amazing and funny and talented and brave. You probably didn't know her but you will most definitely fall in love with her after reading her words.

This is a reminder to appreciate what you have and to not worry about what you don't have. Even if it's just for a moment...

Peace,
dr