this weekend was really nice. i went down the shore with alison-and met my parents there to see my grandparents and aunt. I have not seen my grandparents since before i got sick, so it was really nice to see them.
It was also very hot, so i didn't get to the ocean, which i had wanted to do. but i did get to the boardwalk at night and then to the popcorn zoo on sunday late morning. i have some pictures.






besides the heat this week, i am doing okay. i do not have an appt until next week. alison and i are seeing sleater kinney on wednesday night. It is their last show in New York. Hopefully soon, I will get into someone's pool. I can't believe I have not been swimming this summer yet. Well I can, but I want to go swimming. My sister and niece are coming soon. I am really excited to see Taylor. I haven't seen her in a really long time also. I think the last time I saw her was in October. Oh wait, it was in early February-before I went in for the transplant. My sister asked if she was excited to see me and she said "yes" and then asked if she could come into my building. Aw. because the last time my sister was here in May, Taylor could not come into my apt.
I think we are going to New Hampshire this weekend. I am excited for that. Hopefully it won't be as hot. I am told I am not allowed to walk into the lake but I can swim out -so my friend said he would "plop" me in there from the canoe.
As long as everything stays this way, i am starting school again in September and will hopefully be graduating in December.
I think I will still walk in May in Madison Square Garden because my grandmother has been waiting for this moment for quite a long time. But for now, just focusing on now, things are going okay.
I just wish it wasn't so hot. My body really cannot deal with it now.

will write soon. i'm going to try to write more.
xo
jenn

it's been a lot of days-and more to come, i think day +114.

after day +100, i stopped counting my days. Alison told me she knows this person that is 5 years out of transplant and still counts his days. For me, now it is just post 100. I am back to dates and what day it is. And I am proud of myself for that because I am a pretty anxious person and I am surprised that I dont' do that. Alison asked if I wanted another 100 day calendar and I said "NO WAY". one time couting 100 days is ENOUGH for me.
I wanted to post the good news. that i am 100% male blood cells-so I am 100% donor.
wooooohoooo.
I do have Chronic GVHD. But it is mild right now. SO I was told I do not have to see the doctor for 2 weeks! The GVHD is at the level the doctor likes right now.
i thought this was funny. i called my nurse practitioner today to see if I could go in the ocean. She said Yes. And then I asked if they had any information on my cytogenics report. This is the molecular structure-and where the leukemia would start. She said they had not had it back. and told me to calm down.
Then she says "however the lab did call yesterday, and asked me if you were a boy and i said yes!" hahaha
My chromosomes are boy chromosomes.
It is amazing someone is saving my life. Like it is truly amazing.
Thank you, donor man, wherever you are.

I am going down the shore to see my grandparents this weekened. I have not seen them for many months, since I got sick.
I bought a new sunblock, I finally found some with clear zinc but it was rather pricey. But I see it as a prescription, something necessary for me.

I need to go eat some lunch.
Much love to you all.
I have amazing support and I know it. And it feels really good. Money can help but it means nothing compared to the love and positive energy I have needed and continue to need.

Thank you.

update-day +107

yesterday, i had a doctor's appt to see how things were going.
so far my results have shown that my cells are normal and CANCER FREE.
however, it looks like i have developed Chronic GVHD-my doctor had a biopsy taken of my skin and has started me on some creams. my face is so dry. i went to a dermatologist on monday who gave me some medication/topical cream that was really drying my face out. it was so painful to put this stuff on my face, but i thought it would just some getting used to. But when Dr. Donato saw my face on Thursday, she was like "whoa, your face is really dry"
So I have been itchy. Yesterday after my appt, I took this pill an Atarax, that seemed to put me to sleep for hours. I don't like doing that. Hopefully I will have a mild case.
I also cancelled my appt at The Cancer Institute of New Jersey because they have decided I am not ready to go back yet. I have another appt on Tuesday.
Today, I drove my mom to pick up a rental car because on Monday she will start to work at the Community Blood Center. Ironically, my mother worked there for over 20 years. She has got the go ahead to let me be on my own. I am a lil nervous but I have to just take things as steps. She is going to meet me over at the hospital on Tuesday morning.
It is almost midnight. I am going to watch a movie with Alison now.
I hope everyone has a nice and safe weekend.
xo
~jenn

jenna and beissel's party

Oh yeah, on thursday night, july 13th, jenna and beissel had their birthday party bash-
it turned out to be quite an evening with over 70 people showing up and a good time.
jenna was still in her pajamas the following day at 9pm at night-that is how good it was.
i think there was some point when people were keeping alcohol away from jenna because she was walking around at 2am blowing a whistle.
Thank you everyone for showing up and thank you jenna and beissel for thinking of me.
I wish I could have been there :) next year.
xoxo

it is hot

hello,
it is sunday evening. alison is watching the espy awards because lance armstrong is hosting. well we are flipping between that and Reno 911. It's funnier than Lance.
Friday was day +100. It was quite intense for me. I had to get up at 630 am. my mom, alison and i went to Hackensack and arrived at the hospital around 8:20 am-I got some blood taken-Then I knew I was waiting for a bone marrow biopsy and hoping to get my hickman out. The bone marrow biopsy was done by my doctor, Dr. Rowley. It was one of the best bone marrow biopsies i have ever had. i think it was my twelfth bone marrow biopsy. They are quite painful but usually the doctor injects lidocaine which numbs the area. Dr. Rowley only needed to do the first part of the bone marrow biopsy. The second part hurts more than the second part because it is when they get a piece of bone and it feels like someone is jackhammering your back. After he finished the biopsy and we talked for a little while, i went back into the room to get more blood drawn and wait for the surgeon to come. I needed to get blood drawn for what is called a chimerism. It will detect the percentage of graft in my body that is my donor's and that is mine. We want it to be 100% donor and 0% me.
While waiting for the surgeon, the social worker also came in. I talked to her for a while. I was jokingly talking about how when I got better I was going to shoot rabbits because of the ATG. When I was in the hospital, the ATG (which is rabbit serum) really disabled me for a few days. So to this response, she was like "oh so from this you are really angry.". I was like "no, i'm joking"...
so i don't know-she wants to see me on tuesday but i am not sure. i need to figure out if i want to see someone from the hospital or go elsewhere that has no relation to the hospital.
So then the surgeon came in and took out my hickman. It sorta hurt because it had been in for a while so she had to pull pretty hard. I was also told that for 2-3 days, I could not get it wet, so no swimming for me.
So by 12 noon-I was exhausted.
I was told that I was allowed to go into the ocean though and that made me happy. but also told that i have to watch out for the sun and should not be at the beach in the very strong parts of the day.
I go back to Hackensack Hospital next week and then after that, I need to make an appt-to go to the Cancer Institute and see my doctor, Dr. Schaar. i haven't seen him in months.
I might be going to the Yankee game tomorrow night, but there are a few factors that are going to play into this.
I am somewhat concerned about the amount of people and I am even more concerned about the heat.
I must go to sleep.
good night.
xo
~jenn

Day +99 - Evening

First of all, this is Alison..I don't normally write in Jennifer's blog so sorry for the interruption.
I took some photo's of Jenn and the infamous hickman port, aka tubies aka ipod wire looking things aka the evil twins. For those who don't know what a Hickman is, well it's what most patients get when they are getting IV treatments, chemo, blood or platelet tranfusions. It is also used when Jenn goes to her weekly doctor's appointment and gets her counts taken. Every time Jenn wants to shower she has to bust out the clear wrap and make a "window" to keep her dressing covered. It is a pain and hopefully as of tomorrow her port will be removed and she can take normal showers and enjoy a good nights sleep without the fear of pulling that thing. Enjoy the photos...

day +99

Tomorrow is the big day-well the first step day +100.
Tomorrow morning, i have to be at hackensack at 8:20 in the morning to get some blood work done, to get a bone marrow biopsy and then to also get my hickman out-as aiden berges calls them, tubies. I wish I could take a picture of them but the line starts out of my boob and that seems a lil funny, but maybe i will find a way to take a picture because some people are like "what are you talking about?"
I am a little anxious, this will determine if the donor has taken over -and how much-this is the first bone marrow biopsy i have had since February 27th. or around that date-
I think that may be the longest i have gone without one in a very long time. I was supposed to go to New Hampshire this weekend with Alison and one of my best friends Mark and Pat, but I cancelled because I was not sure if I would be in any pain. Sometimes the bone marrow biopsy hurts me-and just in case something does happen, I do not want to be 5 hours away, and I thought sitting in the car for hours-after that, just did not appeal to me. We hopefully will be going at the end of July.
This week has been a little stressful, thinking about the results, but ativan (anti-anxiety med) is still my friend.
My mother is going to work starting July 24th, so I am going to have to adapt to being alone, which is somewhat scary but is a good thing.
I must go flush my caps one last time today-
On Monday I have a dermatology appt, because my face has been very dry and bumpy-I never had any face/skin issues, but it is something that can happen during the bone marrow transplant. It has become better but I still want to go to a dermatologist. I also have some birthmarks that I want the doctor to take a look at to make sure he does not want to biopsy any or if he does to do that now.
I think I will be going back to my doctor at The Cancer Institute in New Jersey soon, as long as things are okay, and I miss him. I really have enjoyed going to Hackensack but I guess I am very used to The Cancer Institute. I have only had to get a dose of magnesium in the transplant room at Hackensack, luckily but being that the nurses there have only taken my blood, I never really got to know them the way I have become familiar with the nurses at the Cancer Institute.
One time, after I finished my reinduction therapy, I had a panic attack when I entered the Cancer Institute in February. My nurse who knew me pretty well called the Nurse Practitioner and had page, my doctor, Dr. Schaar to see if I could take some ativan. I calmed down eventually-and the nurse came back to me and said "Dr. Schaar has called to see if you are alright and to keep him up to date." and then she said "you know because you're his baby"
And whether or not it was true, it was something that almost made me cry-because doctors don't have that sense of humanity sometimes. And although I'd say it is better than it used to be, I do feel somewhat rushed sometimes with my transplant doctors. My mom says to me "well they have so many patients and you are doing really well"--
So, I hope that whoever reads this thinks of me tomorrow and let's hope that everything is going well inside my body. I will not know my results for probably at least a week.
Soon, I will post some pictures, I have to go do some things to get things together for school in the case I do go back in September.
xo
~jenn