Alan
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Posts posted by Alan
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Yeah, I know, can't shutup. Yes I did get Cyberknife. It worked for me. At the time, I was blown away by the technology of that big computerized robot. It's amazing what it can do. I learned about another new technological wonder. It's called Proton Therapy. You can google or bing it and you should. I thought Cyberknife was awesome and it is, but this thing is just plain crazy.There are currently only 9 sites in the U.S. More on the way. You can follow some links to learn more. I hope I can have it someday if "it" recurs. I hope new patients can get it. From what I read, it can replace surgery in alot of cases.
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Judy, I don't get why all your drs. can't be on the same page. You would think they could have a conference call or something. Seems like all the problems have a common denominater. I too have an umbilical hernia. It doesn't hurt or anything, I was just told to keep an eye on it to look for changes or any pain. I hate it though. The drs. said they could fix it any time I want but I'm afraid it will just break again. They also said they could arrange to repair it next time I go under for something else. Good luck with that scan. I hope they offer up a few choices for treatment if need be. There are so many things they can do these days other than surgery. I really wanted surgery though just to know it was gone. I'm thinking of you, Man, you have sure been through it.
Eric, The train thing is a bit confusing. Where i live, Amtrack does'nt own the rails west of here. They have to share them with huge freight companies. So when the train I need to catch to Philly comes from Pittsburgh, it's always late. I guess it's easier to pull over on a siding and let a 50 car freight train go by. For me to get a plane to D.C.,I first have to go through Boston and it's $400. I can drive there in less than 2 hours. It's all stupid.
The concert in Baltimore was really good. We were'nt the oldest people like I thought we'd be. The performers were. They sounded just like they did 40 years ago though. It had to be the HOTTEST day of the year too. The Red Sox were in town to play the Orioles too. All the venues are within short walks of eachother. There were more Sox fans around than Balt. fans. Their stadium is empty anymore. Not like when Cal Ripken and those guys were there. Don't go there unless you're really hungry. So many great places to eat and sights to see. Pretty city.
KW Judy, It's taxetere right? That stuff never gave me any issues at all. I hope it won't for you either. Mine was just once every 3 weeks. I guess it's effects last that long before they dose you up again. 2 different oncodocs agreed that was the best choice for me at the time. It seems to have worked, so I'm thrilled. I hope you do ok. Not just ok , great.
Have a great day all and stay cool.
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Ann, you're such a hoot. I enjoy your jokes always. keep them coming. KWJudy, Hope all is well with the chemo. Keep up the fight. Mi. Judy, don't you remember me at all? Good luck with your scans. I'll be thinking of you.
Our power blinked a few times last night during the storms. Every time the power shuts off, I have to reregister to get on here. what a pain. Our computer has been giving us some issues lately. It seems like we just got it, but I guess time flies by. We've begun the search for a new one so I guess it won't be long.
I think we'll modernize and go with a laptop. It would be nice to free up the desk space and get rid of all this wire and stuff.
We're heading down to Baltimore later. Going to Pier 6 Pavillion to see Bozz Skaggs and Michael McDonald together. Haven't been to a good concert in years so we're both looking forward to it. We'll be the 2 old farts fanning ourselves. Should be easy to point us out. It's still "Be kind to your lungs week".
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Judy in Mich., Took your advice and added to signature. You could look at my original post in "Introduce Yourself" back when I joined. I live in central Pa. along the Susquehanna river upstream from the capitol Harrisburg. It's beautiful here. The river is the longest unnavigatable river in the country. It cuts through the Appalachian mountains from Coopersburg, N.Y. (baseball hall of fame) to the Chesapeake Bay and is it's largest supply of water. Just a few miles downstream from us is the longest stone arch bridge in the world.,Rockville Bridge. Railroad buffs come from all over the world to photograph it. It is quite amazing. (plenty of smallmouth bass live all around it's piers.) We truly love it here. I was born and raised here. I've done alot of travelling in my time and am still glad to call this home.
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Hey Bud, Any day is a good day to go fishing. We're going into a heat spell here along with alot of the country. I don't know how you guys in the south take it. And then ride 100 miles on the bike too. I'd like to officially proclaim "Be kind to your lungs week". Let's all stay in the AC all week. I sure hope everybody's is working. I had to sell my fishing boat about 10 years ago so I could buy a work van. Aint that a kick in the butt? I still have a small canoe though and it's fine for the river here.
We may get a passing storm later but otherwise, no rain in our forecast. Things are starting to dry up and turn brown as usual for this time of summer.That is good, finally don't have to mow twice a week. Flowers are all doing fine with the soaker hoses. We capture rain in those big green barrels and use it for the dry times. It's a great way to go. I know I don't post much, but I do read it almost every day. You guys are all great inspiration. We all have our own ways of coping with our common enemy and sometimes it's easy to forget why we're here. Sometimes it feels like just a bunch of friends chit chatting about everyday life. I guess that's what makes it so comforting. Bless each and every one of you.
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Are they ever.
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Hi Gaye, I don't know if my case and yours are in any way the same but I lost my voice in the beginning too. The scans showed that the tumor was invading my spine. The nerves that come out of the T1 vertebrae actually control the voicebox and some other areas. There was absolutely nothing wrong with my vocal cords at all. Once the tumor shrunk, my voice came back 100%. I hope they find out that they can help you. A bronchoscopy should reveal alot of info for them. Good luck and let us know what happens.
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Great fun Eric! you're having more fun in NY than I ever did. when I was there, I had to work. I bet you thought when you were in Times Square, We're not in Glascow anymore. Glad you're having a ball.
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Hi Sara, I don't get why there is so much waiting for PET results. Do your scans take place at your treatment hospital? I thought scans could be electronicly transmitted directly to your oncologist's office. I guess the Radiologist dept. has to read it first and write a report. All I know is that I hate the waiting too. Stable must sound pretty good after all you've been through.I also had some enlarged nodes recently. It worried them to where they did needle biopsies. All were negative. I'm sure they will keep an eye on it and make the right call. Keep up the good fight.
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Hi Tom, I'm so sorry that you are in this situation. I also had it in the upper right lung. No surgery for me though, just alot of radiation and chemo. It shrunk and is in remission. I have met men and women who have had that surgery. Was it from the front or the back? Either way it's a brutal operation. The clinic where i was treated had all the followup departments in house. The suregeon actually prescribed physical therapy directly to the PT dept. and was part of the integrated care. Not all hospitals do that I guess but I would ask the surgeon about how to help the involved muscles recoup. Try to find a qualified or reccomended plqce to get started. They taught me a series of breathing exercises and said to start just by walking as much as I could and build up gradually. I sure hope Tee recovers quickly and thank goodness it is out of her and was stage 1.
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Hi julianne, I'm sorry to hear about the pain your dad is in. Mine is constant but tolerable. It seems the more active I am, the more I'm able to ignore it. Yard work won't do itself an I certainly can't afford for someone to do it for me. I can't work hard for long before I'm struggling for air. It's all very frustrating more than painful. They gave me one of those puffers for those times and it helps some.
I guess I didn't uderstand that they operated to "relocate" the ulnar nerve? I must say,I've never heard of doing that. I'm no expert but that sounds drastic to me. Donna's pains and mine sound different than your dad's. Did you ask the Drs. at Cancer Grace about this? Two Dr.s I talked to told me they couldn't do anything. They say that healing and scar tissue are applying pressure to nerves in the plexus including the ulnar nerve. It felt alot better after chemo and rads. Time has made it worse, so I tend to believe them on their dx of pain. Plus , now he has scar tissue from that operation too. Maybe a combination of physical therapy and some other things could help. They gave me neurontin. It helps some. I wonder about accupuncture and some other things too. I've had massages that gave me alot of temporary relief. I wish I could be of more help. I do understand the mental fatigue. Did he see a neurologist lately? Sometimes you really have to bug them and make them earn their pay. Ambien is great at night too. I have trouble getting comfortable enough to even fall asleep. I am reluctant to give medical advice, but I can't stand hearing about people suffering. There has to be something or someone who can help him.
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Hi KW Judy, My mom is 92 and lives just north of Orlando. She's been an orchid grower most of her life. When she was young and lived here in Pa., she and a few orchid friends started a group called CPOS. Central Pa. Orchid Society. I don't know if it still exists but she still tends a group of orchids in her little courtyard. When I was little, I helped tend her greenhouse if she went away. I was always amazed at the variety of colors, shapes and sizes and fragrances. The greenhouse always had a tropical jungle like damp smell. Very pleasant. I'm sure it gives you great releif to be among those wonderful blooms.
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that's when The Next Food Network Star appeared and said Lets Make a Deal. It was too late though because Rachel Ray already brought 30 Minute Meals. See where my head is....
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I don't really have much to add to what Judy and Judy have already said. Just know that my heart is with you and your family. Bless you all.
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welcome Dom, Sounds like you're well on your way along the journey. You'll have every emotion there is . Guilt is normal. We all will listen to any updates you want to share. Good luck.Keep up the good work.
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Thanks everybody for the kind words in the "results" column. I can't understand why it takes so long sometimes. They explained some sort of epifelial(sp) test that takes some time. I'm always happy to hear about all your news too. It's pushing 100 here already at 11:00 am. Thunderstorms later. Stay in day, watch the trial of casey for a while. Too much to do outside, but it"ll still be there tomorrow. have good days all. Alan
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Hi guys, finally after 2 weeks, got back pathology on lymph needle biopsies today at their quitting time. NEGATORY !!!!!
all benign. So good to hear from my Onc. Dr. herself. I'm out of the woods. Pardon me if I go party now. My wish is for all of us to get these reports, Bless all Alan
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Julianne, Hi again. I'm really sorry about your dad's pain. If your onc. admitted to ODing the chemo, that's probably the .numbness in his feet. I don't think narcotic type drugs are right for neuropathic pain. ( morphine, fentinol and the like) they may mask it some but not relieve it. Lyrica worked for me, and can be used in large doses also. Did he stop the neurontin abruptly without talking to his DR.? That's usually not a good idea. At this point for me anyway, I'm glad I could'nt have surgery. I watched the operation on the web. It was the rear approach where they remove ribs to gain access. It looked brutal. I'm sure the recovery was extremely hard. I do honestly believe all his pain comes from pinched nerves near the site of the original tumor and incission. Healing and scar tissue can apply pressure to nerves there. MRI or CT scans might even show that. A certain amount of nerve damage could be perminant, I don't know that for sure. Ther may have been nerve damage in surgery. The elbow, wrist, front of shoulder, and right hand especially the pinky and ring finger numbness tingling and pain are all typical symptoms and results of "pancoast". For example, I no longer sweat on the right side of my head. My right pupal is way smaller than the left one. These symptoms are also common to "Horner's syndrome. You could google or bing those 2 subjects for more info and maybe links to more help. At least mention this stuff to your DR.s or find one who is more familiar with it. Sometimes a dr. will give you sample drugs from their drug closet and find ways to get you some cheaper. ASK ASK ASK. Randy is so correct. We should never be in pain. ALAN
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Happy sunday to all you guys . Judy, I knoe how you feel. you're allowed to just stay in your jammies if you want. It's ok. I'm still waiting for pathology report from last tuesday. There was a 3 day weekend in there, but come on!
Weather here in south central Pa. was great yesterday so we got some gardening done. Had some downed branches from a storm last week an F1 twister hit only 2 miles east of us. We had no power for 27 hrs. Some waited 4 days or so. We were lucky. I can work in short bursts, then just stop for water and breath. It gets done but not like before.
Eric, that trip sounds like a blast. I can picture the Scot coast from my trip there 42 years ago. You may see some places in U.S. that are just as beautiful. From my limited travel, I think you're in a place that's beyond compare.
I'm thinking about all of you and being sunday, I'll include each of you in my prayers as we fight this awful disease. We walk so many different paths and here we all are on common ground. Bless all. Alan
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Annette, You need to be commended for taking on that huge responsibility. It has to be the hardest thing you could have been handed. I'm sure you're doing the best you can. Certainly the kid is troubled, He should be. God bless you.
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Hey annette, try boy scouts.com for knots lol. what happened to his parents? I'm not prying, I just think you don't need all this crap. Friends of ours had a kid who did all that stuff when he was that age. Now he's in his 30s and in washington state somewhere in commune or something growing organic veggies . whatever.
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Good morning everybody, Well where is my picture? I'd like you all to know me. I really do enjoy reading all your posts. It's neat to see that we have lives to live. Once in a while we are reminded of why we're here. So sorry to hear about another loss. Oh Annette, I wouldn't know what to do with that kid. I'm no expert but I think his behavior is a way to get attention. So much has happened around him. Remember when Montel Williams used to send that type of kid to boot camp? Then there's mom. Cancers the world's biggest reality check. We all need a simpler life. Joy and smiles are hard to come by at times. Every day I try to figure it out all over again. Reading these pages sure helps. Eric, you are a funny guy.By the way, Susan brought home a bottle of Glenmorangie the other day. I asked her what did you hit the lotto? I thought of you as I enjoyed a short one on ice. Judy, I remember how the O was for me. It dried me out. I got saline nose spray, it helped. Hope you are untethered . Bud, someday I'm gonna knock on your door and make you take me fishing. As long as I don't have to ride a bike to the lake. Lilly, I loved your post about your family. Mine is scattered all over and I rarely get to see any of them. We stay in touch by phone and email all the time so it's really ok. How many is 60000 characters anyway? There's at least a dozen reading this and I truly appreciate all of you. ALAN
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Hi sara and welcome. I'm new here too. Like you I was waiting for answers far too long. seems lung cancer symptoms show up after it has had a chance to develop. I wish you all the best. I see you love your Royals too. Pretty cool to be able to throw out a 1st pitch. Your youth and fitness will help you get through this. God be with you. Alan
Fridays AIR
in JUST FOR FUN
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Ah Judy, I sure do hope the tests are negative. You really don't need any more to deal with. Interesting point of view Lilly, I know you get it. From a male perspective, Yeah I didn't want it to happen to Susan, but it did. While she was in surgery, I paced the floor for hours. I couldn't stand it. It drove me nuts with worry. When I got her home, I did everything I could do to make her comfortable. At the same time, she was the biggest and bravest fighter I ever met. She was back up and running as fast as her recovery would allow. I don't think she approved of all my methods trying to do what she concidered her domain either. If R dissappears while you're sick, well that won't happen, trust me.