So What's Up With That Cancer Thing Anyway?
Yikes! I've been bad about keeping this updated.
I had my Mediport put in on the 22nd with no problems, I was a little sick to my stomach afterwords but that's nothing new lately. The next day I had another appointment with my chemotherapy doctor. They have rediagnosed my cancer. It's still a sarcoma, just not the one that they thought it was at Millcreek. They have now decided that I have Lymphangioleiomyomatosis (say that 3 times fast)which is even rarer than what they originally thought I had.
What's even more disturbing about this new diagnosis is that:
1) It's usually found in the lungs of women in their 70's or older
and
2) They have no idea how to treat it at Hershey!
In normal cases where it's in the lungs of 70 year old women they treat it with Interferon but because I'm only 24 and it's in my peritoneal area they want to treat it the best way possible to ensure that I have a long healthy life ahead of me. So, they are sending me to Memorial Sloan Kettering Cancer Hospital in New York. I have an appointment on the 12th there and then another appointment here in Hershey on the 13th.
Hopefully Sloan Kettering will have a better idea of how to treat this since all they handle is cancer and will send that information back to Hershey Med with me. I'm a little nervous because this will be the 4th hospital I have been to dealing with this and it seems that the diagnosis just gets worse with each hospital I go to. In the mean time Hershey doesn't want to start any treatment with me here just to make sure that they don't do any thing that could be counter to the directions they get from Sloan Kettering after my appointment.
The night before I went in to get my mediport we ended up at the ER. The drainage tube in my back that had been placed at Montefiore back before Christmas FELL OUT! Mom and I panicked and called my nurse. She had us cover it up and go to the ER just to make sure that I was alright. Mom did such a good job of sealing the hole that they didn't even change the dressing! I was pretty proud of her.
I was pretty sick for a few days earlier this week and was spending a lot of time giving offerings to the porcelain god. Upset stomach has become such a regular part of my life that the doctors actually gave me nausea medicine to help. Other than that the only real problem I'm having is bloating. I look like I'm smuggling a beach ball some days! Mom keeps teasing me about it and she laughs and cheers when I fart because I look so relieved afterwords.
I've been having good days and bad days intermixed and am making the most of the good days when I have them. As of now Mom and I are still chilling at the Econo Lodge but it sounds like progress on the house is pretty far along and that it won't be too terribly much longer til we can go home.
I can't wait to see all the hard work that our friends and family have put into making the house a more healthy and safe environment for the two of us. I hear that they even enlarged our bathroom so we can have a bigger shower!
I had my Mediport put in on the 22nd with no problems, I was a little sick to my stomach afterwords but that's nothing new lately. The next day I had another appointment with my chemotherapy doctor. They have rediagnosed my cancer. It's still a sarcoma, just not the one that they thought it was at Millcreek. They have now decided that I have Lymphangioleiomyomatosis (say that 3 times fast)which is even rarer than what they originally thought I had.
What's even more disturbing about this new diagnosis is that:
1) It's usually found in the lungs of women in their 70's or older
and
2) They have no idea how to treat it at Hershey!
In normal cases where it's in the lungs of 70 year old women they treat it with Interferon but because I'm only 24 and it's in my peritoneal area they want to treat it the best way possible to ensure that I have a long healthy life ahead of me. So, they are sending me to Memorial Sloan Kettering Cancer Hospital in New York. I have an appointment on the 12th there and then another appointment here in Hershey on the 13th.
Hopefully Sloan Kettering will have a better idea of how to treat this since all they handle is cancer and will send that information back to Hershey Med with me. I'm a little nervous because this will be the 4th hospital I have been to dealing with this and it seems that the diagnosis just gets worse with each hospital I go to. In the mean time Hershey doesn't want to start any treatment with me here just to make sure that they don't do any thing that could be counter to the directions they get from Sloan Kettering after my appointment.
The night before I went in to get my mediport we ended up at the ER. The drainage tube in my back that had been placed at Montefiore back before Christmas FELL OUT! Mom and I panicked and called my nurse. She had us cover it up and go to the ER just to make sure that I was alright. Mom did such a good job of sealing the hole that they didn't even change the dressing! I was pretty proud of her.
I was pretty sick for a few days earlier this week and was spending a lot of time giving offerings to the porcelain god. Upset stomach has become such a regular part of my life that the doctors actually gave me nausea medicine to help. Other than that the only real problem I'm having is bloating. I look like I'm smuggling a beach ball some days! Mom keeps teasing me about it and she laughs and cheers when I fart because I look so relieved afterwords.
I've been having good days and bad days intermixed and am making the most of the good days when I have them. As of now Mom and I are still chilling at the Econo Lodge but it sounds like progress on the house is pretty far along and that it won't be too terribly much longer til we can go home.
I can't wait to see all the hard work that our friends and family have put into making the house a more healthy and safe environment for the two of us. I hear that they even enlarged our bathroom so we can have a bigger shower!