melaniem

I never really had headaches, but I would get very dizzy and light-headed when I stood up. I bumped my head the day before I was diagnosed and it HURT so bad!!! It shouldn't have been that painful because it was just a bump, but of course I didn't know my brain was swollen, etc. Most folks like me, had other symptoms, Nina. Sharyn is right, my neuro-surgeon said a pet won't pick up brain tumors, so insist on an mri. Get it checked out but don't let it worry you too much, could be migraines like you said. Melanie

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

Peggy, Your words were absolutely beautiful and quite a tribute to your husband. From one 18 year old bride to another, the song at the end really did me in. I mean, how perfect Peggy. I love it. I'm glad ya'll proved 'em wrong girlfriend. Hope life starts to be kind to you again. Love, melaniem

Addie, I'm sorry about this news. I had a brain tumor which I don't think is the same as a brain met.? I don't know Addie, I just love you and hate this disease. Be encouraged though by all the others here who have had and are living with brain mets. Go find something FUN to do this weekend!!!!!! Love, Melaniem

MaryAnn, Thank you for your beautiful post, it inspired me. Congrats on 5 years. You go GF. Melaniem

Hoping Brian's new treatment plan will work. I love you both and you'll be in my thoughts, prayers and dreams. Love Mel

Ralph, I had a tumor on my bronch too, and they were able to resect it. Mine was actually right on the border of bronch and young surgeon didn't want to take it, but older mentor surgeon guided him and it was successful. Thank goodness for age and wisdom, huh? Hope you have good results too. Melaniem

Hey everyone, I'm sorry my posts have been so erratic the past few months. One lung surgery, chemo, 2 brain surgeries and 20 whole brain radiation tx's in 10 months keep a girl busy. ha. My euphoria after the first brain surgery I understand may have been steroid induced, although my spirits are still good. I am still on steroids and they are awful. I now have Cushing's Disease which is making me lose muscle and bone. Will hopefully start some physical therapy this week, the oncologist says the muscles must be used or I could lose them. Right now it takes both hands to lift off of chairs, toilets, etc. I tripped this weekend in a convenience store and could not get up. My sister and kids had to all help pull me up. I am 37 years old. And this is all from steroids. I will be on them for about another month. Because of the brain swelling we have to wean off this gradually. I'm down now to only 8mg day. I will have another brain MRI in about a month, that makes 9 so far, to make sure the swelling is still going down. I look like a punching bag too. Another lovely side effect is bruising. I've gained 20 pounds, it's all these fat pockets that accumulate on your belly, neck, face.I really try not to complain too much but it's starting to get really old. Everyone on these boards can vouch you just have those days when you aare so sick of being sick. BUT....then I realize I am the lucky one, I am ALIVE!!! And I WILL be OK, this isn't forever. My family and friends hosted a benefit for me this past weekend and it was very successful. The work that went into it was un-believable. There were about 500 people who came and went and donated very generously. I am truly blessed. Our God is so good. I LOVE the new string that started on the boards by debi!!! Even though I have not posted I check in regularly and everyone of you are so genuine in your words and encouraging. There are times I am in awe of some of you!!! So this is my add-on to that post and it's to everyone of you....... words are powerful, they can absolutely destroy a person or they can save lives, build someone up, or completely change someones day. Each of you have at some point used your words in a way that has been powerful and encouraging to one of us here and that is a gift. Thank you to everyone who has lifted me up!!! OK, enough already. I'm going to New Student Orientation w/my freshman college girl today, pray that I can get around Ok, w/my 2 half-blind eyes and hips that aren't working so good anymore. Cancer sucks, but the Lord is good. Melaniem

My sweet Pat, Your words were once again beautiful and gracious and heartfelt. I agree with others that at times it's perfectly ok, normal to wallow!!! And, YES, sometimes it IS about YOU. That's not being selfish, I think it's being honest. You are the caretaker and sometimes, it's ok to admit, YOU need to be taken care of. We all love you... because of the cross... melaniem

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

Hi, guys, I've never done this. Here goes: *My head feels clear this morning! *I get to be home with my kids today and we're having a Yahtzee tournament, loser cooks lunch! *Having enough money to pay my bills. *My garden which is full of tomatoes. *Our 3 new little kittens and my daughter who loves them to pieces. melaniem

Come back often for support. We are all inthis together.

Hey all, Absolutely unbelievable!! I wqas having terrible headaches last week,also trying to wean off the steroids at the same time. Headaches got worse over weekend, head CT Monday, brain MRI yesterday. Something is back in the exact same place of original tumor site. Massive edema, hence, the headache. Neurosurgeon thinks it is radaiation acrosis, radiation dr. thinks it's new tumor. Either way it has to be removed ASAP, so I will have brain surgery again tomorrow morning. I am numb. I don't know what to think of the doctors who assure me by doing all their procedures (WBR x 20) would protect me from this. Is the treatment worth the cure?? They fried my brain and now the tumor is back anyway. It was a waste of time, all my hair fell out again, not to mention the financial burden it has cost paying a $35 co-pay at each treatment. Seems like a bad week on the boards again. My love to all, I shall pray for all of us who are fighting this horrible, cruel disease. Because of the cross, Melaniem

Pat, I second Katie about being dehydrated, although when you feel miserable the last thing you can do is drink. It's a vicious cycle. My cancer center let me come in and get fluids through IV when I was dehydrated from chemo, really helped. I'm sorry for you and Brian. Hang in there, I know there will be better days ahead!!! Good luck at the doctor today and post back when you know something. Because He lives, Melaniem

Thanks everyone for posting encouraging words!!! After having me wait while they called my dr. in the OR (which, of course, I took as a bad sign) turns out everything is normal. WOO0-HOOOO!!!! Now we just have to get weaned off these steroids. Oh, to be able to sleep again, I can't wait. I agree with everything you all said about the doctors wanting to give hope and all. This doctor really swings from optimism to "it could come back at any time" at each appointment. I don't know, it doesn't matter, he is famous here in Austin for what he does. And what he did is save my life for which I am grateful!! So enough said. I'm around, just not always posting, just too tired sometimes. God bless, Melanie