cindi o'h Posted August 25, 2005 Share Posted August 25, 2005 Hi NanaJane. I read and re-read your post about three times. First of all. We are a cool group, aren't we? Now you are one of us. Like it or not! You got roped in! Secondly, and briefly, I did not have WBR. I did however, have the chemo rad. thing. And I refused the last treatment of radiation. I told them NO! No more! Not one more! I was so burned, tired and sick. I thought one more would do me in. I wasn't being uncooperative. I was trying to stay alive! They did sweet talk me into that last treatment. It may have made the difference....who knows? In any event. I remember what it's like to get fried alive. It ain't pretty. They did take me to the brink. Amazing though how quickly that burn will leave you. Tomorrow you will feel good when you have no radiation. Friday you will begin to feel even better. By next Monday, it will already be in your past. That cough. That one I can't help you with. Try hydrating yourself. Lots and lots of fluids. You got crisped. If it isn't better, best to call for help. I don't think it is the cancer back. I will bet it is from the treatment somehow and that it will settle down. Just rest now Jane. You have done some hard work. Cindi o'h Quote Link to comment Share on other sites More sharing options...
endangered but surviving Posted August 25, 2005 Share Posted August 25, 2005 Good grief, brings back dread memories, but you will survive being fried. I did not have WBR, but they did the back of my neck. My scalp was like raw meat. Could not sleep, itched burned oh how dread it felt, but this is all in the past tense. You will recover, impossible as it seems. Nuclear holocaust we are suvivors!!! I read Lord of the Rings three times to get through, felt like frodo, kept the barrowights at bay. I think like Cindi says, it is the radiation effect on your throat. Lots of water, baking soda gargles and I used altoid sour drops by the tins. god bless sweetheart, joyce Quote Link to comment Share on other sites More sharing options...
Patkid Posted August 25, 2005 Share Posted August 25, 2005 Oh, just praying and praying and praying for relief. Lord, relief or lessening of any one of the 'owies'. You are being rocked and soothed in prayer. Love Pat and Brian Quote Link to comment Share on other sites More sharing options...
MilliBr1 Posted August 25, 2005 Share Posted August 25, 2005 Keeping you in my prayers. Quote Link to comment Share on other sites More sharing options...
Addie Posted August 25, 2005 Share Posted August 25, 2005 Jane... Oh, I'm so sorry for what you're going through..but I bet a lot of the emotional stuff is tied to the steroids. Today is day 4 for me of brain radiation...but since I had PCI last November, I am getting lower doses. I too have a "head full"...both hemispheres and in the cerebellum in back. I wasn't/am not particularly symptomatic either...these were found seredipitously by MRI. They started me on 8 mgs daily of Decadron..which I now find out is a HALF DOSE I was a crazy woman...and one who wasn't sleeping. I'm now cut to 4 mgs. and doing much better...but still showing some signs of Decadron Craziness and still not sleeping all that well. The thing is...I refuse to buckle under to this stinkin' disease. I keep putting one foot ahead of the other, leapfrogging as much of the fear or angst as I can...and trying to enjoy my life to the extent my physical abilities will let me. Yesterday, I even played 9 holes of golf with my hubby! Funny you mention a cough...as I've had a throat tickle and cough lately too. Not major...but new...and yet my very recent CT scan shows nothing. I'm stuffier when I get up in the morning too...sort of sinus-y like you say. Please hang in there Jane! This radiation may well have wiped out ALL the little buggers in your head...as I'm hoping will happen with me....and thereby giving us lots more time yet to LIVE and enjoy doing it. Okay...so maybe we'll never feel quite as healthy as we did pre-cancer...but there is still some quality of life to grab and enjoy...so let's you and I plan on doing just that, okay? I keep telling myself...maybe the steroids and brain rad. will sharpen my sense of humor and I'll take this act on the road. I could be the first female, BALD comedienne...huh? People used to tell me I look like Carol Burnette....so why not? Keep us posted, Nana...and for now, just rest as you need it. When you're up and about...push yourself a teeny bit and soon, you'll be feeling lots better. Thinking of you as I head back under the "toaster" today. Quote Link to comment Share on other sites More sharing options...
Nana Jane Posted August 26, 2005 Author Share Posted August 26, 2005 Thank yu all for your responses to my earlier posts. It's been a bad week for bad news that just keeps coming. I finished my 15th radiation treatment Wed only to learn that the "bronchitis" I'd had for the whole 3 weeks of radiation is a recurrence of the lung disease. I think I knew it all along, as the cough was just like the one I had a year ago when I was diagnosed. But going though XRT was all I could handle at the time, and it needed to be done. The skin effects are pretty awful right now. Scalp burned, blistered, itchy beyone words. Even the inside of my ears is swollen, painful and itchy. This should last another week or so and then improve. Of course I have lost all sense of time, so a week could be a year as far as my body feels. They tapered my steroids a bit too quickly, too. Starting yesterday I have had a splitting headache and vomiting. Actually feel as bit better since I increased the decadron earlier today. But sleep? Oh my gosh can I sleep...even it seems in midsentence. Can't concentrate to read, so the soft musis on the CD player is comforting, as are some of the mindless videos and DVDs my 7 year old granddaughter brought me. Friends have hired a dog walker to take Champ out for his daily long walk which has heen a huge relief to me. He knows things are not normal in the house, and is sticking very very close to me. My velcro golden retriever. He is so important to me I can't even thin about returning him the retriever rescue organization. I hope we've got some trips yet to take together. So over the weekend I'm resting, letting my body restore itself a bit, and deciding about chemo. The onc wants to do Alimta startomg next week. Yesterday I was dead set against it. Today, my will to survive is kicking in and I'm sure I'll be ready next week. I keep thinking of the penguins in March of the Penguins..their sole reason for being is to survive. And the conditions are considerably worse than they are for me, so how can I complain? My prayers and healing energy are going out to you all...there is such good spirit and hope on this website. You are amazing. Will keep you posted. Love, Jane Quote Link to comment Share on other sites More sharing options...
cindi o'h Posted August 27, 2005 Share Posted August 27, 2005 Jane. Keep that music on low and do take yourself outside your body the best you know how. Sorry to hear that disease has returned to your lungs. Many of our members have had good success with Alimta. It seems as though everyone has a different set of side effects. I hope that yours will be mimimal. Keep up your powerful "addie" tude. It is one of the few things we do have control over. Cindi o'h Quote Link to comment Share on other sites More sharing options...
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