melaniem Posted April 23, 2005 Share Posted April 23, 2005 Hi to all. It's 5 in the morning and i can't sleep. My sister posted and let you all know how surgery went. Scary, but OK. The biggest fear of the doctors and me is with my vision and I'm afraiad it's not getting better. I have no sight out of either eye on left side. It's not just blurry, it's total blackness. This seems to be causing my right side to blurry too maybe trying to compensate.? I feel so scared right now. I am an independent girl who takes care of everybody else. I don't do this vice-versa well. I feel vulnerable. Out of control. What if I don't get better and this is as good as it gets. That's not even mentioning the fact of how in the HELL do you pick up the pieces and go on??? I had just started thinking life was going back to normal and really having whole days when cancer idn't consume my life and then boom, here we go again. ONly magnified. I'm trying to figure out how to go on. Ya'lll remember I have 4 kids. I'm 37. I have moments of great strength and moments of utter despair. All normal I know. It's just so hard to live when they change about every 5 minutes. I will have brain MRI's every month, then yearly. All otheer scans came back NED. (bone scan, CT of chest/abdomen). But it's hard to take comfort when something like this happens and that scan (the PET) is the one that missed it. The "state of the art" scan. Hmmmm. My daughter graduates from high schoool in 5 weeks. She made the college dance team here at Texas State University. My other daughter will be a junior in high school and another 8th grade. My sweet Matthew will be 11 this summer. Last Sunday I took Mallory shopping for a new dresss because it had been promised before all this happened and I sat in a chair outside of the dressing room, this lady sits down besides me and begins telling me all about how her and her daughter are shopping for wedding dress and how she became a randmother that week also. I thought I would absolutely lose it before I got out. I'm sure the lady thought I was nuts. I have family who keep wanting to come to visit and I am pissed because I don't want to see everyone elses grandbabies and wonderul lives when I may not even live ong enough t seee mine grow up. Thanks for letting me ramble, maybe when I'm off the vicodin and possibly can see all the typo's I'll think this is humorous. Love, Melanie Quote Link to comment Share on other sites More sharing options...
karenl Posted April 23, 2005 Share Posted April 23, 2005 Hi Melanie Good to see you posting, and glad everything went OK. Thanks for getting your sister to log in and let us know how you were doing. Sounds like you are doing great considering what you have gone through - the discovery of brain metastasis must be shocking. I am the same age as you, with two little ones, and I can't even begin to imagine how I would cope with the hand you have been dealt. I guess you just get through it the same way you got through the days after the intial LC diagnosis - one foot in front of the other, one day at a time. You know we are beside you every step of the way. Love Karen Quote Link to comment Share on other sites More sharing options...
Ry Posted April 23, 2005 Share Posted April 23, 2005 Oh Melanie, I know this is hard. I can't even begin to imagine how hard. Concentrate on the postive side...no cancer anywhere else! This may all be a bad dream soon. I think you will be around for Matthew's wedding. Please make them refer you to someone about your vision. You need to be seen by a specialist to protect what vision you have, and or gain it back. Take care Melanie~ Rochelle Quote Link to comment Share on other sites More sharing options...
Addie Posted April 23, 2005 Share Posted April 23, 2005 Mel....take a little time for the pi$$ing and moaning (you've earned it!)....and then climb back up on that Positive Horse....and ride, girl!! (Ry makes a LOT of sense!!) When I was told in Feb., after only 4 mos. remission, that my cancer was back and I had a liver and pancreas full of it....I literally slept for three days! It was too scary to be awake and thinking about IF I didn't make it! So I slept and avoided. Then I decided it was time to get past the fear and LIVE each day again, doing what I had to do. Some news is more distressing than others...and the risk to your eyesight must be frightening beyond words. I've been there too...with Graves Disease and 5 eye surgeries...back 30 yrs. ago. My first two surgeries could have rendered me blind instantly, as they involved removing tissue that was wrapped around the optic nerve. So....I understand some of your fear. But it's very soon after your surgery...and you need a little time to see how things go. Your vision may improve as the swelling reduces....so don't give up hope. Hang in there. Get your fears out...it's healthy to vent and unload...and we are here to listen when you need to do that. But muster up your strength and optimism too...BECAUSE you have those four kids you want to be around for!! Refind your humor...it'll help you too! FWIW...I think it's pretty amazing that you just had surgery and were able to get on the 'puter and come post already!! Even with a few typos! Keep us posted...but stay positive, ok? Quote Link to comment Share on other sites More sharing options...
TAnn Posted April 23, 2005 Share Posted April 23, 2005 Melanie, I ditto what Addie and Ry said. Give yourself a little time to heal. Maybe the swelling is what is causing the eye problems. Thank goodness you have no cancer anywhere else. This disease is scary and when you find out you have it, you are on the biggest rollercoaster ride of your life. So glad you posted so that we could be here for you, to support you and listen to your fears. I'm only 6 years older than you and have been battling this disease for 2 years. I also have brain mets. Stay positive and keep coming here for support. We are here for you. TAnn Quote Link to comment Share on other sites More sharing options...
Patkid Posted April 23, 2005 Share Posted April 23, 2005 Melanie, How wonderfully lucky those 4 children are to have you for an example. You have such stamina, determination, and class. Sometimes things seem really scary at about 5 in the morning. I wish I could bring you a cup of tea and a warm cinamon roll and wrap you in a big blanket and rock you for a bit................Try to imagine being rocked by all of us who are rooting for you and who love you. We are praying for reduced swelling and better eyesight and and best medical care for you. Hug the children for us. Lots of love Pat and Brian Quote Link to comment Share on other sites More sharing options...
kimblanchard Posted April 23, 2005 Share Posted April 23, 2005 Melanie, You've "earned" the right to be P** off and not have to listen to everyone else's garbage. I've learned that no matter how much I complain there is always someone else who has it rougher so I try to keep my mouth shut these days! Enjoy what is going on right now with your kids and we'll be saying prayers that those later memories will be made as well! Take Care! Tammy Quote Link to comment Share on other sites More sharing options...
Treebywater Posted April 23, 2005 Share Posted April 23, 2005 So very many ((((hugs)))) to you. Quote Link to comment Share on other sites More sharing options...
Don Wood Posted April 23, 2005 Share Posted April 23, 2005 Glad to have you back, Melanie. Quote Link to comment Share on other sites More sharing options...
Justakid Posted April 23, 2005 Share Posted April 23, 2005 Mel- You have every right to complain, anytime you want too! I understand where you are coming from cause remember I'm 37 also with two kids (13 and , I have to hang on until they BOTH graduate, that's all I want! My 8yr old says he is going to be a brain surgeon and he is also going to cure cancer with just taking a pill. I told him to go for it, there were a lot of people he could cure! Hang in there, you can do it! Quote Link to comment Share on other sites More sharing options...
Fay A. Posted April 23, 2005 Share Posted April 23, 2005 Your typing is fine, Melanie. I am in awe of you. I understand your feelings when the woman shared her blessings with you. And I know you didn't ask for any advice. But I'm going to give it to you anyway. Allow yourself a few moments of sadness over what may or may not happen. Then put aside the sadness and find pleasure in the good news of others. You may have to work at it. It takes discipline. But if you can do it you'll waste very little of your time in sadness over what might have been, and spend more time being happy in the now. And making those memories of NOW are what sustains us through the rough days. Sometimes the good news from others is the only good news we get. We'll do better if we cultivate an appreciation of Good News no matter it's source. Quote Link to comment Share on other sites More sharing options...
shineladysue Posted April 23, 2005 Share Posted April 23, 2005 Melanie, This must be so scary. I can't begin to imagine it. Just know that there are many of us out here pulling for you. Don't forget that, Ok? Lots of prayers coming your way. Love, Sue Quote Link to comment Share on other sites More sharing options...
cindi o'h Posted April 24, 2005 Share Posted April 24, 2005 Dear Melanie. For someone who was scheduled to croak by next Thrursday, I think your typing is pretty good! love, Cindi o'h Quote Link to comment Share on other sites More sharing options...
melaniem Posted April 24, 2005 Author Share Posted April 24, 2005 Thanks to all of you for your beautiful words of encouragement. This at times is a dark, dark scary road we all journeying down but there are people out there who hold flashlights to help me se the way and I thank you. The vision is stilll my biggesst issue. Nerosurgeon said it's gone completely, permaanently. He says nothing willl help iether. He says my brain will adjust to seeing things differently and compensate. But things at this rate are pretty scary looking. I cannot drive a car. Very hard to cook since I can't see if it's done. Reading, my love, is quite a feat. But yet, I'm NOT blind, I can see some, and for that I am grateful. I start WBR in a few weeks and will be neding rides to the cancer center. We live about 30 min. away. So we are trying to figure out things like taht too. Not to mention all my kids' practices, schoool meetings,etc. How to get everybody where they need to be w/out me driving. Luckily my 2 oldest drive and are both big help. I'll post again soon. Just wanted to say hello and thank you for being with me. Thank you Rick and Katie for this site. Mel Quote Link to comment Share on other sites More sharing options...
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