melaniem Posted July 12, 2005 Share Posted July 12, 2005 It's been a few weeks since the 2nd brain surgery and we're just taking a 'watch and see' attitude. After 20 rounds of WBR I was dx with brain necrosis. It's not a tumor but it is dead brain cells that build up and generally your body absorbs them but mine was too much so I had to have surgery to remove it because it will kill you just like the tumor, because of the cranial pressure. I am on massive steroids, have been since April, we were weaning off of them when all of this started again, so now I'm back up on them again. My feet and knees and ankles are so grotesquely swollen i think I will call the dr today, I can barely climb stairs, get up from a chair, etc. I am upset about all of this. I wish I had researched WBR more before I did 20 treatments which caused this. And if the presssure and swelling won't go down, I get to do MORE surgeries!! The good thing is it's not cancer, of which I am grateful, bad is that it just might be an on going problem. I look like Frankenstein's wife, bald with this big gash going down the back side of my head...all I need are those little knobby buttons in my neck!!! I hope this post makes some sort of sense, lung surgery, chemo, radiation, 2 brain surgeries in 10 months makes one a little loopy I think. Love to all Melaniem Quote Link to comment Share on other sites More sharing options...
Fall54 Posted July 12, 2005 Share Posted July 12, 2005 Dear Melaniem What you havent been through!!! I want you to know you are in my prayers and I will be watching for updates from you in the good news forum!! God Bless You, Jane Quote Link to comment Share on other sites More sharing options...
ginnyde Posted July 12, 2005 Share Posted July 12, 2005 Melanie, You have been through the wringer. But as you said the good news it is NOT cancer. Hope you feel a little better each day. Quote Link to comment Share on other sites More sharing options...
Addie Posted July 12, 2005 Share Posted July 12, 2005 Mel, honey....you've been pulled thru the ol' knothole backwards! I'd say you've earned the title of SuperSurvivor! Good grief.... But you know...the wry humor is there in your post. You're not taking any of this and whimpering your way out of the room with your tail tucked, like a scared puppy. Nope. You're standing up to all of it!! I love to see a little humor and some attitude coming thru in your post. You hang in there...cuz that attitude will see you a long way with all you're going thru. You know you have all of our vibes, wishes, thoughts, prayers....for things to settle down with the necrosis...so that you DON'T need any more surgeries for it. Enough already, huh? And do call the doc about all that edema. There has to be some adjustment made or a med added to help you out on that score. Keep us posted, Melanie...I think you're amazingly UN-loopy, all things considered! And eventually, you'll have hair to cover up that scar...so don't worry about it! Sending you "non-swollen and no more necrosis" vibes and a big hug!! Quote Link to comment Share on other sites More sharing options...
bunny Posted July 12, 2005 Share Posted July 12, 2005 seriously, what a trouper you are. your attitude is amazing, who wouldn't be a bit fed up after all that? I can't even imagine. we're pulling and praying for you here. xoxo amie Quote Link to comment Share on other sites More sharing options...
Cindy RN Posted July 12, 2005 Share Posted July 12, 2005 You should be so proud of yourself, you have been thru the worst and have come out shining. Keep the attitude, Cindy Quote Link to comment Share on other sites More sharing options...
cindi o'h Posted July 12, 2005 Share Posted July 12, 2005 boy Melanie. To me, it sounds as if you are doing great! You have been pulled through the knot hole backwards, as Addie says! At the time, it seems as if you didn't have much choice in the matter. It is hard to know what to do and what side effects of treatment each one of us will encounter. If only we had that crystal ball before we have to make the decisions! I have been looking for that crystal ball and haven't come across it yet. Just so very glad to hear from you and you are sounding so upbeat especially for someone who has been through what you have. You are a fiercesome fighter! Keep it up! love, Cindi o'h Quote Link to comment Share on other sites More sharing options...
Don Wood Posted July 12, 2005 Share Posted July 12, 2005 Hang in there, Melanie! We're with you. Quote Link to comment Share on other sites More sharing options...
MelanieLR Posted July 13, 2005 Share Posted July 13, 2005 Dear Melanie, Just want you to know that my prayers are with you. You remind me so much of myself, interesting that we have the same name. Just keep the positive thoughts flowing as much as possible. Hugs & prayers, Melanie Quote Link to comment Share on other sites More sharing options...
karen335 Posted July 13, 2005 Share Posted July 13, 2005 Hi Mel, Glad to read you are doing better. I had surgery to remove one brain met. I then had stereotactic radiation TX after surgery. Only one time. I then had my MRI's. Doctors said they think they saw something different. They wern't sure what it was, said either tumor regrowth, new tumor or necrosis. They scared me. Last MRI reading was was almost a year ago. Do you know how the body rids itself of dead cells? In my prayers, Hugs, Karen Quote Link to comment Share on other sites More sharing options...
karen335 Posted July 16, 2005 Share Posted July 16, 2005 Hello Ms. Melanie, When you get a chance a quick respose would be appreciated... Hope you are feeling better. In my prayers each day, Sending gentle hugs, Karen Quote Link to comment Share on other sites More sharing options...
Maryanne Posted July 16, 2005 Share Posted July 16, 2005 I am thinking of you Melanie, and my heart goes out to you. I am sorry you have been through so much. But I know in the end it will all be worth it,and this will be behind you. Take care, Maryanne Quote Link to comment Share on other sites More sharing options...
SJAS Posted July 16, 2005 Share Posted July 16, 2005 Melanie, Add me to the "Melanie is Awesome" Admirerers Club. (We're working on our cheer right now ). Steve had such an awful time with WBR - I can't imagine having to follow that up with brain surgery. Don't beat yourself up on the WBR - you probably didn't have any other real options. We initially refused it after Steve's original 4 brain lesions were resolved with chemo. The next MRI showed about 13 new brain lesions. In our discussion with the radiologist, we told her about all our concerns about WBR. She told us that while all the other effects were real possibilites, she could promise that all those things WOULD happen if we did not treat the brain tumors. Quote Link to comment Share on other sites More sharing options...
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