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 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
posted by Jenn at 9:53 AM
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