Orange Agent
Experienced user
Joined: 29 Jan 2006
Posts: 55
Location: Mountains of NC
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 Posted: Sun Jan 29, 2006 9:25 am Post subject: New member, old patient, signing in |
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Hi all,
Though I am fast closing on 3 years since initial diagnosis, this is the first time I have tried to make contact via a support forum.
My screen name is Orange Agent and it took him over 30 years (since Vietnam) to catch up with me. I've noticed that my doctor (who I like a lot) doesn't get hung up on long words or technical terms. For example, I've never heard his use the word stage, or remission, or any other word that you need to go back to college to understand. His most encouraging words were "I can help you but I can't cure you". He's actually unsure exactly what type of lymphoma (NHD) I have. After the initial biopsy he thought some sort of low agression small cell. 6 weeks into chemo he put me on the nasty stuff because he wasn't satisified with my progress. Now nearly three years latter, including 13 CT-Scans, 1 Pet Scan, 3 ultra sounds, a million blood tests, and a total of 8 months chemo, I'm still kicking around. Well, maybe some days I don't kick as much as I do on others.
I have a growth in the left side of my neck that seems to come back every year and stay for a couple months (I should whisper that because I haven't seen him for 10-1/2 months now. I also have a pain in my back that comes and goes. A Pet scan verified that I still have active lymphoma in both my left neck and left groin. Recently my left leg swelled up to twice the size of my right one, but now some 4-5 months later it seems to be more or less normal. (Grown up's only - although I'm only 71 I havn't had an erection in over 3 years). Good old Lymphoma, it just seems to be the gift that keeps giving and giving and giving.
For those of you who mention night sweats, Dorothy and Toto used to visit me every night to spin the sheet over me just right so I could sleep. I dare believe that at least some of you know exactly what I'm talking about.
I get around fine .... just not as active as I once was. Bills are pretty much taken care of by the VA (although I go to a private clinic where we're all Dr's, Nurses, Patients on a first name basis) so things could be a lot worse. I don't get depressed but sometimes I do reflect on quality of life ...... but soon realize how much better I have it that a lot of others (especially the young).
Well, guess that's enough rambling but if any of you have had similar experiences or simply want to ask a question, feel free.
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Burt |
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