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Aug 28, 2002 - 8:33 pm
Hi everyone, |
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Aug 28, 2002 - 8:33 pm
Hi everyone, |
Joined: Apr 2002
Hi Stacey,
If you could tell us what type of NHL you have, and where you are in your treatment, then I think others might be able to give you some more insight and perhaps answer your questions.
Obviously everyone deals with their illness differently and we all have our own story to tell.
I'd be happy to talk with you.
-Scott
snmdeselle@attbi.com
dx. Burkitt's Lymphoma 9/01
Joined: Aug 2002
Hi Scott,
Thanks for the email. I was diagnosed with low grade NHL in March 1998, had 6 months of chemo and have been in remission since. While that sounds great, they tell me that the type of lymphoma I have isn't curable and they expect it to come back. So basically I wake up every day thinking "is this the day", every pain, I freak out, every time I don't feel good I think this is it. Funny enough I can't even trust my body to tell me something is wrong because I felt fine when I had cancer and then I found out I had a 15" x 9" tumor in my abdomen. I tried to return to my "normal" life after treatment and didn't really understand why I couldn't... then 9/11 hit and I just basically exploded and have been a mess ever since. It's kind of a long story and don't want to bore you. I'm healthy and I should be happy but I feel like a ticking time bomb and I don't know what to do. You are very sweet to respond to my email. Thank you. How are you doing?
Stacey
ssredblue@aol.com
Joined: Apr 2002
Hi Stacey,
I keep pushing this non-Hodgkin's lymphoma email list that I'm a member of. There are 600+ people there with non-Hodgkin's, the people who have been there the longest all seem to have indolent lymphoma.
I think you have to register on Yahoo! and then send an e-mail to "nhl-subscribe@yahoogroups.com" to start getting the emails.
Don't look at what you have as a deadly disease or a "time bomb." Sure, it will come back, maybe again and again, but it can be treated again and again. You have to look at it as a chronic disease that needs to be treated, like diabetes. (Except that diabetics have to treat their disease every single day, whereas you only have to deal with NHL whenever it happens to show up every few years.)
There are people on the list who were diagnosed in the 1980's who are still doing quite well. "Indolent" literally means "slow to develop." PLUS, there are so many new treatments for this lymphoma being developed, that by the time you lose your remission, there may be a new treatment for you. (Have you gotten Rituxan yet?)
I, too, had no idea I had stage IV non-Hodgkin's lymphoma. (You can read my story on my webpage at this site.)
At any rate, while I was going through chemo (CHOP+Rituxan x 8) I had a LOT of seriously horrendous days. From what I understand from the people on this NHL mailing list, I had a really bad reaction. I was sick constantly. I couldn't work at ALL. What I had to figure out was that if I was having a good day, I didn't want to ruin it by thinking about and anticipating days that HAD NOT EVEN HAPPENED YET. You know what that's like, having had chemo. Your next treatment is always looming over you. You've got to ignore it and live each day individually.
So don't ruin the good health you are experiencing now by focusing on getting sick one day. Heck, we are ALL gonna die one day--lymphoma or not. As a matter of fact, you will probably outlive a LOT of people who are feeling sorry for you right now because you have cancer and they don't.
I am doing quite well, I am finishing up some radiation and have already been declared in remission. I hope you are feeling better.
patty
Joined: Feb 2002
Stacy-
I'M NEW TO CSN also.I have NHL,have for about 4 1/2 yrs.mine is incure and slow growing,too.I question the same way you do!? But, I'm thankful I'm here to question.I live my life as fully as I can,my kids say mom you never know when your going to die...you could be run over crossing the street. Jo98
Joined: Apr 2002
Stacy,
Sorry I'm a little late getting back to you.
Reading the other responses, I totally agree with Patty (wallpa) and jo98 - you've got to just concentrate on one day at a time. Forget the past and don't worry about th