stand4hope

Oh, and P.S. Yes, our son is being Superman. He's taking care of all the yard work, dogs, etc. He even took one of the dogs to the vet for us yesterday. He is healthy and has been a God-send to us right now, although he is struggling to cope with his dad being sick.

Dearest, sweet, Leslie, I saw your post to me on my thread, and I can assure you that not being 100% pleased with stable is very normal. I remember posting right here on this board how I didn't feel good about it when Don got "stable". Like everyone else, I thought & wanted there to be shrinkage. I was really quite disappointed. Little did I realize how good stable really is. It was at least a year ago, so it would take me forever to find that thread, but everybody said the same thing to me that stable was good, and I just didn't get it. It wasn't good to me. I didn't get it then, but I do get it now. And, guess what? STABLE IS GOOD!! LOLOL! Congratulations, sweetie! May you have years and years and years of STABLE!!!! Love, Peggy

Today was a bit better. Don's fever was normal this morning, however, it did spike back up to 102.4 early afternoon, but came back down late in the day. His O2 is holding at about 90-92 with 3 liters of oxygen, and he was more coherent and in a better mood. The two antibiotics are being continued and we are still waiting for culture/biopsy reports. The onc told him this morning that his lungs are going to get better because the infection is causing this and not cancer. He blames the steroids and/or chemo for wiping out his immune system. I think the problems he had over the weekend weren't brain related. I think it's his spine. In fact, I KNOW it's his spine and would bet my next paycheck on it. I believe this because of something he did today when he was sitting on the side of the bed and it was a deja vu of Saturday's episode on the tractor. I'll spare you the details until I talk to the onc & neuro about it. It was too late in the day when I realized it and their offices were closed, but their partners will both be visiting him tomorrow, so I'm going to ask about it. I realize he still has the abnormal EEG and the brain could still be causing this problem, but regardless of the source, he has lost muscle control in his back/spine. I'm so convinced I'm right that I will be SHOCKED if the doctors don't agree. I won't mind admitting at all that I'm wrong if they say so, but I just bet I'm not. In fact, physical therapy is coming in the morning and I'm going to tell them, too, so they can recreate the scenario and confirm it, or not. On a sad note, he asked the onc, "Do you want to buy a motorcycle?" It broke my heart! He told me after the onc left that he couldn't trust himself now to ever ride it again. Love and hugs, Peggy

Don has a very bad infection - fever 103. They don't know if the steroids or chemo or cancer is causing it. They did the bronch today and are slamming him with two different antibiotics and did blood cultures. The pulmonologist said he couldn't get very far into the lower left lobe because there's too much blockage there. He did get samples to biopsy off the top edge of the left lower lobe. He also got biopsies from the upper right. He said the lymph nodes aren't a problem. He washed him out in both lungs (lavaged (sp?). He said he couldn't rule out cancer in the right lung, or that there is cancer back in the left lung. He said he couldn't "see" cancer, but the biopsies would tell. Right after the bronch is when the fever shot up and all hell broke loose. His EEG showed areas of abnormalities and weakness in the brain, but no definite evidence of seizures. It did say, however, that basically the areas of weakness would indicate the potential for partial seizure activity. His new neurologist is putting him on an anti-convulsive medication and will examine him further when he feels better and is more alert. Because of the high glucose (207), the onc would like to cut down on the decadron, but wanted to wait & consult with the neurologist because of the brain issues. He fell down in the bathroom this morning and claims to have slipped on the wet floor. He told me about it, and that two people came in to help him. He apparently bribed them somehow to not report it because he didn't want them to put up the rails on the bed. I reported it to the nurse myself. As far as who helped him up and didn't report it, an investigation is under way. He's ok from the fall, I think. He scraped his arm, though. The pulmonologist said that his breathing is a lot worse than Don said it was. I'm like - DUH!!!! Does anybody even write down what I'm telling them. I wasn't there for the first part of the neurologists interview with Don, so I missed the big, "I'm not having any trouble breathing" lie. His sats were 86-88 after the bronch. He is now on 6 liters of oxygen. I came home to get a couple hours sleep and will call to decide whether to go back up. He's beginning to be a bit difficult with the nurses. They won't let him out of bed because he's so weak. He's mad about the rails being up on the bed, and he also keeps asking them to take out the i.v. The machine kept beeping and he insists he isn't putting up with that all night. Because of the anesthesia, he kept drifting back off to sleep and I had to go through the same thing every time he woke up: "The rails have to stay up and the i.v. has to stay in!!" What a day! Trish: I'm still practicing that line. I've got it down pat and ready to use. Sorry this is so long. I certainly don't expect you guys to keep responding to these posts, but I know a lot of you want me to keep you updated, so that's my update for today. I'm off to take my nap. Love and hugs to everybody, Peggy

Hi Kristiloo and WELCOME! You have come to the right place for support, encouragement and hope. We are looking forward to getting to know you and your Mom. Love and WELCOME! Peggy

Well, poop! Cindi, like Kasey, I wish you didn't have to go to your appointments alone. It sure does sound like you had a caring doctor and nurse, though. It seems to me that I've heard about this procedure, but I can't be sure. I know that everyone that has had any kind of an effusion drained almost always reports that they feel a lot better after it's been done. I vote for feeling better! Even though Tarceva didn't work for my husband, Iressa did, for 9 months, and they are very similar. Every time I hear "Tarceva" now, I think about Bill's wife, and of course I always think about Mr. Ry. Just think about those two and pray for the same results - and so will I. Love and hugs, Peggy

Dear TAnn, Boy, this has just been a stinky day, huh? It's better to be safe and wait a week to let those numbers drop back some - the last thing you need right now are liver complications on top of everything else. I know you said you are getting the B12 shots and taking the Folic Acid, but I don't recall you saying if you are taking Decadron the day before, day of, and day after chemo. My research on Alimta said that the reason that is required is to prevent a rash. A rash is definitely one of the side effects. Hang in there, Teri, and keep us posted. Love and prayers, Peggy

Ginny typed my EXACT thoughts. I was thinking, "Well, crap, this stinks!" . . . and it does. Let us know the plan. In the meantime, prayers being said for Fay A. to our great and powerful Almighty God. Love, Peggy

Trish, I am so happy to hear this great news. GO, JEFFREY, GO!!!! Love, Peggy

I still don't know all the details, except Don has pneumonitis in both lungs, a small pleural effusion and two mediastinal lymph nodes, 13 mm each, are mentioned. The pericardial effusion is described as moderate. More prominent and new bone lesions are mentioned in the ribs and, particularly the thoracic and lumbar spine. No change in the 2 liver tumors. He is running a low-grade fever (99.5 to 100). A bronchoscopy is scheduled for tomorrow morning and biopsies to see what's going on. He now has a pulmonologist on his team, and a neurologist is likely to be added tomorrow. The pulmonolist was wonderful. He said there was a "lot of activity going on in both lungs, and I need to go in there to see what's going on, and I want to do some biopsies." He's going to start him on antibiotics right after the bronchoscopy. He didn't want to start them today because he said they can affect the results of the bronch. Lymph nodes have never been mentioned in any scans for two years. It doesn't say anything about them except where they are located ("mediastinal", and in one place it says "pretracheal") and seen in the "AP window??" (whatever that is), and gives the size. What does that mean? Aren't they always there? Is that large? Does anybody know? We, unfortunately, cannot get the EEG (brain) results until tomorrow morning because of technology breakdown reasons. The pulmonologist told him he was going to be there a minimum of 2 to 3 more days. He's madder than a tormented snake, but too weak to get up and walk out of the hospital. He did settle down in the afternoon and said, "Well, I guess I was pretty presumptuous to think I could get through this without any problems." That's all I know. Any prayers are still very much appreciated. Love to all, Peggy

Happy Anniversary, Terri! Love, Peggy

LOL! How true! How true! Hey, Jen, I understand you've got a little disappointment that there wasn't more shrinkage, but I love the saying where they say the way to eat an elephant is one bite at a time. Any reduction in the size of cancer tumors is the best news ever. Right now, I would just about give my own life to hear the words shrunk, shrinkage, reduction, smaller, etc. You go, girl! Those are some mighty fine words you posted! Prayers for more of the same! Love, Peggy

Pat: LOL! Just wanted to clarify. On the other thread I said I wished EVERYONE had a friend like that. I think someone else said the other. I am blessed to not only have personal friends like that, but my wonderful cyberfriends, too - just like you! Love, Peggy

Hi Mary Lou and WELCOME! I don't have a thing to add to what everyone else has said here. Wow! I wish everyone could have a friend as wonderful as you. About the abbreviations, just ask us which ones you are particulary curious about, plus there is a glossary (on the left) you can click on. Here are few that pop into my head: NSCLC - non-small cell lung cancer SCLC - small cell lung cancer SRS - stereotactic radiosurgery SOB - short of breath Rad - radiation tx - treatment dx - diagnosis Love, Peggy

Dear Sandy, I'm praying for good results for Donna, too. By clinically, I think what he/she probably meant is he could tell by looking at her. One of my husband's oncologists said that they can see the worst scans, but if they patient looks good, they just don't get that shook up about it. That's been true for my husband. Terrible scans, but outwardly looks good and just keeps on keepin' on, so even though they do treat what they see, they just don't get too worried if they look well and are doing well. I just betcha that Donna is going to look well and be well. Love, Peggy

Congratulations, Dee! I know I'm exciting about my hubby hitting 2 years coming up soon, and am already looking forward to 3. Love, Peggy

CONGRATULATIONS on 10 years, Connie! That is absolutely WONDERFUL!!! Love, Peggy

Dear Beth, Checking up on you was the second thing I did tonight after posting my own update. I was thrilled to see your post. I think we were all incredibly worried about you. I can tell that you are feeling really bummed out about all this. Things have been tough for you and it's just a lot for one person to deal with. Please know that my thoughts and prayers are with you, and I know God is looking over you every minute of the day. Love and hugs, Peggy

LOL! I just typed out an update and lost it all because I hit the "Back" button, so here it goes again . . . . Not much to report yet. They only did one test today - the echocardiogram. The pericardial effusion is stable, so that's not the problem. That's a HUGE relief. That leaves the problem related to the chemo (Alimta) or another chest problem. He's getting a CT scan as I type this of chest and liver, and they are going to do a blood work up to see if his blood counts are down from the Alimta. The last test they have planned is an EEG for tomorrow morning of his brain to see if those two incidents this weekend were seizures. Thank you so much for the information, Ry! I don't think they would have even thought of it if I hadn't ASKED for it. His breathing was a lot better this afternoon. Respirations were much better (20), O2 was 92, and heart rate was 89. He's feeling better, too, just exhausted. The onc came in at 6:15 and was surprised that he was doing so well, but at least Don backed me up and told him he was/is having breathing problems, but it does come and go. He also told the onc that when he had those two spells it felt like he had no control over his muscles. Side comment: I just can't believe how much steroids increase a person's appetite. He has been literally eating us out of house and home. I can hardly keep enough food in the frig and he's going through at least one box of ice cream bars a day, plus 4 or 5 danish. He had a HUGE lunch at the hospital at 3:00, and then ate a HUGE dinner at 5:15. I am just overwhelmed at the quantity of food he has been consuming. He needs the weight gain, though, so I'm not complaining - we just need a bigger refrigerator. Well, that's all I know for now. I'll add onto this thread tomorrow when we get the rest of the results. I just can't thank all of you enough for your good thoughts, responses, and prayers. You are the absolute best! Love, Peggy

The onc wants to put Don in the hospital to get some tests done. His breathing has gotten worse - rapid and shallow. Last night, I checked his respirations several times while he was sleeping and they were 32 or 33 each time; resting heart rate was 93. The onc is primarily wanting to check the pericardial effusion, so he wants to get a CT and echocardiogram, plus blood tests to see if the Alimta could be causing it instead of effusion. He wanted the tests done ASAP and thought this would be the fastest way, plus easier on Don rather than trying to go from place to place all in one day in this heat. We're waiting for a call that a bed is ready, and then we're off. I'll let you know when we get some results. Love, Peggy

Go, Cindy, Go! Keep up that great momentum you've got going on. Prayers for you always! Love, Peggy

Hi Trish, It's encouraging to know there's an end to the night sweats after Decadron! Thanks! I'll be saying prayers for successful cyberknife for Jeffrey. He is going to have both the lung and liver done right? Please let us know as soon as you can how it goes. Love, Peggy

Dear Maryanne, I recall the posts you put on here about your dear friend, and I know how much this hurts you. Please take comfort in the fact that you were such a blessing to her and made her time on earth so much more enjoyable. Love and hugs on their way to you right now! May God bless you with His comfort. Love, Peggy

EXCELLENT IDEA, Debi! I sent you a PM. Same for Pat and anyone else that suggested this. Just for today, just for now. I'll try that. I think it might work. I really do understand this ego thing - we've all got one, so I do understand, it's the dealing with it that's hard. These ideas really help a LOT!! Thank you! Love, Peggy

He had another incident this morning. He insisted on going out for breakfast to Cracker Barrel and insisted on driving. Well, he had another one of those spells in the restaurant. I don't think it's his back. I think it's brain/head related because he can't remember what happened. I was getting our name on the list and I turned around he was holding on to a display rack to stay up. I said we were going home and he got mad and said he was going to eat. He snapped at me several times and people were watching. I asked the server to grab a chair and he yelled "NO!" We finally started to a table and he wouldn't let me support him, but the server followed right behind him with a chair. He was better after he ate, but I asked him if he got dizzy, did his back start hurting, did he feel like he was going to fall over, etc. He didn't remember! As we ate, I had a serious talk with him and told him I was driving home. I also told him that I have also noticed he gets winded and out of breath, and I was tired of waiting for him to tell me about it. He admitted to it. I told him the doctors can't help him if he doesn't tell what symptoms he's having. He said that he didn't want his onc or anybody to think he was crashing because he wasn't. I told him he wouldn't think that and he would just treat the symptoms. I told him he has been bossing me around for 37 years and from now on he was going to do what I said. I told him no more driving, no more walking into stores alone, etc. and he was just going to have to veg out, relax and work crossword puzzles until this passes. He pretty much agreed. I told him I thought he was having problems from the radiation to his brain or from the steroids since he isn't recalling things. He was very cooperative and said that as much as he's had done to his brain that could be true. He did hand me the keys to his truck, but while I was paying the bill he walked all the way to the truck and didn't sit in a rocking chair and wait for me like I told him to do. When I got out to the truck, he said, "Well, I just had to prove to you that I could do it!" MEN!!!!!!! Also, his sweats have now turned into drenching, sheets and blankets soaked, and even his pillow soaked all the way through - and it's a very thick pillow. When he gets up off the couch, his T-shirt is soaked. Then, this morning he said he was having chills. I think a lot of this is caused by the steroids and he is supposed to start cutting back tomorrow, but if he's having brain problems, that might not happen. It's hard to know what is causing some or all of this - chemo? steroids? brain radiation? brain tumors? All of the above? I'm going to call the onc first thing in the morning and fill him in. In the meantime, I'm hunting for a rope to tie him up with - just long enough to get to the bathroom. LOLOLOL!! Thanks for listening. Love, Peggy P.S. And thank you EVERYONE for sharing your own stories about this independence problem. It's helped me a lot to know that others have done it themselves and have cared for some who have. I loved the fluffy towel over the head, Lynne.