melaniem Posted August 21, 2005 Share Posted August 21, 2005 Hello to everyone. I've been keeping up, browsing, not too much posting. Really, really tired these days. In 10 months I've had lung surgery, chemo, 2 brain surgeries and 20 WBR treatments, plus lost lower quadrant of vision. So needless to say, it's all catching up. Addie, I have been on Decadron since, now sit down 'cause this hurts, since APRIL!!!!!I have gained over 25 pounds, I have extrememe swelling/edema in feet/legs well really, everywhere. But that's part of the fun of steroids. You swell everywhere except the brain, which is why you're on them. After long term, you develop Cushing's Disease, th huge swollen cheeks, huge fat deposits on neck and upper back, muscle and bone weakness. Steroids are not a laughing matter, I really had no idea how bad they were. In the beginning I felt euphoria and struggled with the insomnia like Addie but Ambien helped there. After a while I really started to struggle w/depression though, but we all do after a long battle. But the steroids definitely bring on terrible mood swings. The insomnia gives way to a host of other side effects, that's the weird thing, the longer you have to take them the more side effects develop. Paranoia, and I'm weird enough already! Especially after 2 brain surgeries, can ya'll believe my family trusts my cooking? ha ha. Well that's my take on steroids. I hope this next week is good for all of us. My kids went back to school last week and my oldest to college. I am glad to have a routine going now anyway. I have a china cabinet that I had started to re-do last year, then I was dx w/cancer and all work stopped, so for a year now, I have looked at this 1/2 dark ugly brown and 1/2 white chabby chic china cabinet in our dining room. I hope to finish that although, just to do the dishes or put a load of laundry in requires a lot of energy these days, so it will be very SLOW going. Maybe by Christmas? Love to everyone, Melaniem Quote Link to comment Share on other sites More sharing options...
Ry Posted August 21, 2005 Share Posted August 21, 2005 It's good to see you here, good luck with your cabinet. Quote Link to comment Share on other sites More sharing options...
Kasey Posted August 21, 2005 Share Posted August 21, 2005 Dear Melanie, Guess we don't really 'know' each other too well. I was dx very shortly after you and also had a lobectomy. Boy, I am sorry all you have been, and are still going through! Believe it or not, I do think of you farily often...wondering just how you are doing. Do you think you will get off the steroid stuff an time soon? I don't know much about them ~ only the side effects that I read about here . I am hoping and praying that you may regain some control of things and make some giant strides forward. Good to hear from you! (((Melanie))), Kasey Quote Link to comment Share on other sites More sharing options...
Patkid Posted August 21, 2005 Share Posted August 21, 2005 Hi, Melanie! So great to see you again. Brian is trying so hard to get some hair to grow for his anticipated 'do'. Ya gotta love a project...........the process is the pleasure, enjoy!! Love Pat and Bri Quote Link to comment Share on other sites More sharing options...
Addie Posted August 21, 2005 Share Posted August 21, 2005 Aw Mel....It's so good to hear from you.... In 10 months I've had lung surgery, chemo, 2 brain surgeries and 20 WBR treatments, plus lost lower quadrant of vision. So needless to say, it's all catching up. Addie, I have been on Decadron since, now sit down 'cause this hurts, since APRIL!!!!!I have gained over 25 pounds, I have extrememe swelling/edema in feet/legs well really, everywhere. But that's part of the fun of steroids. You swell everywhere except the brain, which is why you're on them. After long term, you develop Cushing's Disease, th huge swollen cheeks, huge fat deposits on neck and upper back, muscle and bone weakness. Steroids are not a laughing matter, I really had no idea how bad they were. ...but what a horrific picture you paint of the steroids. Oy gevurtz....I sure hope I don't have to be on them for months. I wonder if your brain surgery necessitated the longer regimen? And a question...was the brain tumor a different type of cancer than your lung lesion? You've really been through it....but you know what shines through your post and makes me smile? Your humor and the fact that you're looking forward to getting that china cabinet done! You go girl... I'm significantly better now on the lowered dose of 4 mgs. of Decadron daily...but still sleeping only fitfully and only every other night. Still, I'm grabbing enough sleep to remain reasonably human...although nobody is asking me to cook too often or hold their pork chop OR butcher knife for them! My first time with brain radiation (PCI) I just remained on the prednisone I was already taking. 4-5 mgs. at the time, I don't quite recall. Never had to up the dosage...did fine. But I guess THIS time the symptoms could increase NOT just because it's the second round of brain radiation...but because the brain swells around the tumors themselves. And I've got 'em in both hemispheres AND in the cerebellum in back of the brain. I tend not to struggle too hard with side effects...and that has been the case from day one, with this disease. Can't tell you why...other than luck. BUT you can bet your bippy I will be OFF this freakin' Decadron ASAP and back on prednisone to hold things in check. I'll insist on it. I've been on pred since 8/2003 and haven't gained but maybe a couple of pounds. Face looks a bit jowlier and fuller...but hey, I'm nearly 60. I'm not supposed to look like Jennifer Garner, am I? I sure wish I could wave a magic wand and restore all your energy for you, Melanie....but don't let the cancer buggers rob you of your spirit, which is intact and incredible! It was so sweet of you to pop in and post your commiseration re: The 'Roids. Kinda makes you wonder why they can come up with prednisone, often touted as a real "miracle drug" in that it helps or corrects so many things...and yet Decadron, as "sister steroid" to the pred. is a miserable, sleep-robbing, face-puffing, weight-enhanching tiptoe thru misery, doesn't it? Hang in there, Melanie...and I intend to do the same. I'll let you know how it goes...if I'm not sitting in a corner somewhere stuffing doughnuts in my face and trying to count the dimples in my puffy neck! DON'T LET 'EM GET YOU DOWN! I want to see a picture of that china cabinet when you finish it....okay? Quote Link to comment Share on other sites More sharing options...
Maryanne Posted August 21, 2005 Share Posted August 21, 2005 Hi Melainie, I just want to say it was good to hear from you. I feel so bad for all you are going through. But it seems to be working and that is all the counts in the long run. Good luck with your china cabinet. Like you said take your time and you will get it finished. I bet it will look beautiful. Take care, Maryanne Quote Link to comment Share on other sites More sharing options...
bunny Posted August 22, 2005 Share Posted August 22, 2005 it's great to hear from you, Melanie. I know I am new-ish here, but I am inspired by your attitude and outlook. so thanks, and enjoy the work on your cabinet! xoxo amie Quote Link to comment Share on other sites More sharing options...
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