stand4hope Posted April 7, 2004 Share Posted April 7, 2004 Hello, I’ve been lurking for a couple of weeks and thought it was time to just jump in and say hello. My husband is a VERY private person, about his life and his illness, so I also didn’t want to join until he knew I was doing it. He said he didn’t care, but he doesn’t want me use our real names (for now anyway). A diary of his illness is below. At this point, he is coping very well and so am I. The first 2 wks were tough, tears for me and anger for him, but after it soaked in and we quit crying and shouting, we were running the race to win The only way we found this disease was because he was having a continual severe headache. His family doc sent him to an ENT to check his sinuses (he’s always had sinus problems). The ENT wanted him to have surgery for a deviated septum (that’s a crooked nose bone ) – I won’t repeat what he told that ENT. He then asked our family doc to order and MRI of his head – and that’s when it all started. As you can see below, they found 8 brain metastatic tumors (“critters in my head” is what he calls them) and went hunting for the primary tumor which was found in his left lung. The headache immediately went away after 24 hrs on Decadron and he felt great. He was the most healthy and physically strong man I know – he was in better shape than our 27-yr-old son. Almost never, never sick. In 36 yrs., he’s probably missed less than 10 days work. After 3 weeks on Taxotere, I thought the chemo was going to kill him instead of the cancer. The onc said because of his great health they really hit him hard w/chemo & rad at same time to try to knock this dead, but chemo (especially Taxotere – which he had severe allergic reaction on 3rd dose) and radiation at the same time was just too much and it wiped him out for two months. He was down in bed with a fever and fatigue almost 24/7. He did recover from that and is doing much better now. He’s on a 3-month treatment break right now (2 mos. left) and we are really enjoying spring. I thoroughly enjoy all of your posts and am most impressed with your positive “can-do” attitudes. You are a great inspiration. My faith in God and His Son keep that horrible thing called “fear” from taking over (it still gets in occasionally, but it never takes over), and for me, the words “All things work together for good for those who love God . . .” (Rom. 8:28 ) have got to be the most comforting words ever written. It doesn’t say that all of our loved ones will be healed but, to me, it does say “Don’t worry – be happy!!!” Love to all, P.S. I do have one complaint about this forum – where’s the chart that tells all of us dummies what all these abbreviations mean? I finally figured out PCI and BAC (but it took a week), and I already new NSCLC, SCLC, WBR, WBRT, COPD, rad, and some others, but I recently saw NED, and you got me on that one. I guess tx is treatment?? dx is diagnosed?? (If that’s so, I sure can’t figure out where you got the “x” from). I thought NED might be NEwly Diagnosed, but that didn’t make sense since everybody was celebrating this thing called NED. I even tried Never Ever Die, but that didn’t work either. Quote Link to comment Share on other sites More sharing options...
stand4hope Posted April 7, 2004 Author Share Posted April 7, 2004 I don't know where that smiley face came from on the Rom. 8:28. Somehow the second 8 turned into a smiley face. Quote Link to comment Share on other sites More sharing options...
Ry Posted April 7, 2004 Share Posted April 7, 2004 Welcome to the group. I like the NED being "never ever die" but it means "no evidence of disease". We're glad you're here even igcognito. Quote Link to comment Share on other sites More sharing options...
SandyS Posted April 7, 2004 Share Posted April 7, 2004 Welcome aboard - but you can't use Sandy - that's mine! Just kidding! And let me introduce you to NED - NED is one of our absolutely favorite people around here! After your hubby struggles thru all this treatment, hopefully you'll also be a personal friend of NED! It means No Evidence of Disease! Sorry "Tony" had a tough time with the chemo/rad - it IS a tough combo. Hopefully they'll be able to find him something else that won't be quite as bad. Keep coming here for love, support and understanding, Hugs and prayers, SandyS Quote Link to comment Share on other sites More sharing options...
betplace Posted April 7, 2004 Share Posted April 7, 2004 Welcome, NED is our favorite set of initials, I had the same problem couldn't figure it out so I asked. Now I'll return the favor No Evidence of Disease, and of course ED his dasturdly brother is Evidence of Disease. We are glad you joined us, and hope that things turn around for you and your husband soon. Blessings Betty Quote Link to comment Share on other sites More sharing options...
Margaret Posted April 7, 2004 Share Posted April 7, 2004 I'm glad you decided to make yourself known and share the story. I like the intrigue of not knowing your real names...I suspect that might change in the future. I hope you find the kind of support and comfort here that I have. Blessings, Margaret (really!) Quote Link to comment Share on other sites More sharing options...
DeanCarl Posted April 7, 2004 Share Posted April 7, 2004 As you've already seen NED is the guy we ALL want to meet someday. Wait until somebody posts a "NED" post in the "Good News" forum and listen for the "YAHOO'S" coming from every state in the union ... and a few places overseas also. "dx" is diagnosis but, like you, I never figured out where the "x" came from. Although they use "Rx" for a perscription and that makes even less sense! So, whoever you are , welcome to the board. I'm sorry you had to seek us out, but very glad you found us. Dean Quote Link to comment Share on other sites More sharing options...
stand4hope Posted April 7, 2004 Author Share Posted April 7, 2004 Phew! Glad to finally know who NED is Thanks to everyone for the warm welcome. He actually said "don't use MY name", so since there is already a Sandy, I'm going to go ahead and use my real name, which is Peggy. Everybody have a good night. Peggy Quote Link to comment Share on other sites More sharing options...
David P Posted April 7, 2004 Share Posted April 7, 2004 Hey there "Sandy", for the time being... You and "Tony" enjoy your spring -- and summer -- and fall -- and winters for the next 30 or 40 years (as it sounds like "Tony" responds well to his treatment), because if it takes that long, we will find out who you are! We have already narrowed our search to Indiana. Take care. David P. Quote Link to comment Share on other sites More sharing options...
Fay A. Posted April 7, 2004 Share Posted April 7, 2004 Welcome, AKA Sandy... And just in case it comes up, NERD stands for No Evidence of Recurrent Disease. It's my personal favorite (I made it up for myself after my last lung surgery). Sadly, I am no longer a NERD, but I hope to be one again very soon. Quote Link to comment Share on other sites More sharing options...
TheresaKB Posted April 7, 2004 Share Posted April 7, 2004 Hi Peggy AKA Sandy, I like 'never ever die' for NED, but 'no evidence of disease' is good too. You have a great attitude and it is really refreshing. Welcome to the big family (1000+). Theresa Quote Link to comment Share on other sites More sharing options...
Angie Daughter of Bill Posted April 7, 2004 Share Posted April 7, 2004 Peggy Welcome to the family! You will find much support here. It took me a while to figure out all of the abbreviations also. If you don't know, just ask. Sounds like your hubby is doing much better. I hope he gets to meet NED soon!! Have a blessed day! Angie Quote Link to comment Share on other sites More sharing options...
gerbil runner Posted April 7, 2004 Share Posted April 7, 2004 Welcome! Hope "Tony" is feeling better soon and finds out about NED first-hand. Quote Link to comment Share on other sites More sharing options...
Frank Lamb Posted April 7, 2004 Share Posted April 7, 2004 Hi Peggy,I had agressive doses of radiation and chemo also.I didn't feel better for a month or so after treatments stopped.Then I got feeling better quickly.Welcome--- This group is very knowing and caring as you will discover. FRANK L. Quote Link to comment Share on other sites More sharing options...
Donna G Posted April 7, 2004 Share Posted April 7, 2004 Hi "Sandy" Peggy. Welcome. I also hope you meet NED. I have enjoyed his company in recent years. Keep us posted! Donna G Quote Link to comment Share on other sites More sharing options...
Don Wood Posted April 7, 2004 Share Posted April 7, 2004 Welcome, "Sandy"! My wife never smoked. She also went through carboplatin/taxotere, but was able to make 6 sessions. Wish you both well. Don Quote Link to comment Share on other sites More sharing options...
J.C. Posted April 7, 2004 Share Posted April 7, 2004 Sandy/Peggy, Welcome and keep us posted, on Tony. A forum that we fear to get in, but that brings help, knowledge and friendship. J.C. Quote Link to comment Share on other sites More sharing options...
ginnyde Posted April 7, 2004 Share Posted April 7, 2004 Welcome San/Peg, Wish you didn't have to be here, but since you are you will be so glad you found us. My husband's hair is growing back after its second lose. He was always a blond with straight hair. First regrowth, came in curly. Second, it looks like it is coming in dark. I tell him it is like having a new man in my life. So call your honey Tony, it is like a new man. And when you're tired of him, just call him George. Just kidding, of course, Peg. And welcome again. Ginny Quote Link to comment Share on other sites More sharing options...
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