Brenda, So sorry to hear about Denny's rough time. I thought we would lose Richie too. He was also so dehydrated and the infection went untreated for so long. He too lost so much weight and was in so much pain and all he did was sleep. Your case is much more difficult since his surgery was more invasive than Richie's, and he had chemo before surgery. Richie did not. Richie too has COPD. Don't give up hope. We will keep you both in our prayers. Is Denny in a hospital closer to your home now? Went to surgeon today. Infection is finally calming down. Still has huge hollow opening under skin and the surgeon is hoping this will come together soon. These infections take forever to heal. Richie's incision infection has been going on for 8 weeks. But he was given oral antibiotics and I think Denny is on IV antibiotics and that is the better way to go. You take care. You are both in our thoughts and prayers each day.
Hi Joanie, It was nice to hear that Richie has overcome everything he has been through. I sometimes think that this will be the end for Denny, but if Richie can come through then maybe Denny will too. Yes he closer to home now, only 10 miles and that beats the 80 to Chicago. I have not found out what the doctor that was gonna scope his throat found, but I am on my way there now and will follow up later on to let you both now. I can not believe how intensive and draining this kind of surgery is for someone. I hope I never have to go through it. I am glad they got the cancer but how will his life be otherwise now? I hope he can pull through the recovery process with the COPD holding him back. Take Care and thanks again for your message.
Back to the surgeon today. Wound is looking better, but still secreting pus and pinkish blood. . It will crush Richie if the surgeon doesn't let the wound close. He is still worried about being so far behind with chemo/radiation. Right now he is suffering with severe gas. He was told gas is good, but what he lets out is abnormal. Last night he asked me if I heard from you about Denny's progress. How is he? Where is he now? We have learned to take one step forward and two steps back each day. The healing process is tough and long. Your life is forever changed. You have to learn to eat all over again/
Hi Joanie, How are you and Richie? Let me know! Denny is finally getting to a rehab that he will come home from hopefully! It is right here in our town and that is a plus too. He is finally getting better from all the connecting problems like breathing and strength. His eating is the set back now and I know that is natural with this surgery. He finally got off the continuous tube feeding after developing complications, too much sugar for one. He got to where he could eat a few bites of regular food and he enjoyed it. They started giving him Ensure between meals and now it seems he is getting sick at his stomach more. I do not know what to think, this is such a scary condition in so many ways. How is Richie doing? It will be great when this is all over for us as well, but I also am so glad they are still around for us to worry about every setback they go through! That is a blessing.
So glad to hear from you. We were told not to use Ensure. Too much sugar. Richie did not really take too well to the nutritional drinks. Two Cal HN was prescribed when he was only able to eat 300 calories per day. This did not go down well either. But someone suggested taking the drink with a spoon, like eating soup, and this did help. The two cal HN was a prescription and was very difficult to get, and before I got the OK from the insurance, we purchased a case for $50. Richie goes on Tuesday, the 19th to have the port put in and the chemo will start on June 25th. They are using the Macdonald Regime of chemo/radiation. It sounds very scary. Richie took well to Pastina, Chef Boy R Dee spaghetti O's, stouffers stuffed peppers, mozzarella with proscuito,. These helped him put on a few pounds and stayed down with the nausea. Keep in touch
Hi Joanie, I was just thinking about you both, How are you? How is Richie? For the first time I can actually see the end of this cancer nightmare. Denny is doing better, getting stronger every day, even walking by himself now without a walker or someone there. He is in a rehab place "they say" but it is just a nursing home and I hope to bring him home in just a few days. There is nothing going on there that can not happen at home. I can work with him doing physical therapy. They have terrible meals there and that is the biggest challenge now is his eating. I can feed him better I believe. Also why keep racking up bills on the medicare rolls? That is one of the problems with medicare now, I believe, is overcharging and unnessacary charges. I can help him now at home. He can have home nursing come in a few days but he needs to be home and not in such a depressing place. It is so sad to see the people in a nursing home, alot of them forgotten. If he can just get this new stomach stretched out so he can eat more than a few bites will be a milestone also. How is Richies wound? Take care and write soon. Brenda
So happy to hear that Denny is doing better. I fully agree with you. Get him out of the nursing home. You will do so much better taking care of him. Remember each day is a trial with the food. Somedays things will agree with him and then some days the same food will not agree with him. Trial and error. If he gets nauseaus tell him to lay on his left side and if it is really bad, tell him to take a nauseaus pill. Richie finds Zofran helps quickly. Unfortunately, they won't give us more, but he has some other pills that they gave us for chemo, that he will try. Wound closed up last Sat. Finally after 8 weeks of oozing. Now port will be put in on Tues. and chemo/radiation is set to start June 25. Scary time. Richie is have the Macdonal Regime of chemo/radiation. Ever hear of it? I know Denny had chemo before his surgery. Any tips for getting through that. Richie will be home and get the chemo through a 24 hr. pump for 5 days. Then 28 days off and then the real chemo/radiation start. I pray for strength. I am petrified. Keep in touch . We think of you both every day.
I do not know what the McDonald Regime is but Denny was on Epirubicin at first with Xeloda pills every night. Xeloda is what the doc said gave him a heart attack, it is hard on the heart, usually not until later on after the chemo. on the 2nd round was Cisplatin, it was okay except Denny had a bad cold and of course chemo knocks your immune system down anyway and he got pnuemonia. But Thank God it still shrunk the tumor and they got it all with the surgery. Richie will do just fine. They give you so many rescue drugs for the side effects so you will have a plan for those. The cold bothered Denny some when he would touch something cold. but that passes too. The chemo will be a breeze compared to the surgery! Sounds like a good way to do it (I read about the mcdonald regime) online. I think you all will be just fine with it all.
Thanks Brenda. Getting nervous about tomorrow and the port being put in. Over the weekend Richie's blood pressure went way up and he is suffering with stomach pain. Went to Dr. today and he doesn't know but thinks it could be from diet, eating habits etc. Does Denny suffer from severe gas. Richie could empty a banquet room with his gas. Hope the day went well for you. Joanie
Hi Brenda, Thinking of you and Denny. How is he doing? Home from the nursing facility? Richie had port done and started the chemo on Monday. He is carrying around this pump, which gives him the chemo through a drip. Doing OK so far. Now if I can just get him to chew more and eat slowly, I think he will do much better. Thinking of you both and hoping all is going better. Joanie
So Glad Richie is starting the chemo, IT is really a tool that will help knock that cancer out, Denny would have not had all the cancer removed if it wasn't for the chemo shrinking the tumor and killing alot of the rest around it. Chemo is not that hard to get through like the surgery was. Denny is still at the Rehab. He caught that C Diff virus in the hospital and it has come back so they are starting again to get rid of it. They are gonna be more aggressive this time the doc said, IT is a real bad stomach virus and it starts from antibiotic use if you can believe that. There is just a few things they treat it with. So it has set us back. Denny is having trouble swallowing and chewing too. He has gained a few pounds but not nearly enough. He can only have a few bites out of every meal. They increased his meals so he gets more each day but it so tough getting back to a regular intake. IT is slow process isn't it? How is Rich doing on side effects of the chemo? Denny did not wear a pump. I think that may be a better way though. Denny was getting to much at first and it was tough on him as far as nausea and mouth thrush.
Well Joanie remember to takecare of yourself and get away from everything for a few hours to enjoy some pampering just for you! It helps! Take Care, both of you! Brenda
Good Morning Brenda, Thinking of you both and wondering how you and Denny are doing. Richie is doing OK. Finished 1st week of chemo and now going to get radiation/chemo which will begin on July 23rd. Seems like everything Richie eats is making him sick with nauseaus and pain. He takes two pills and that helps. Kytril and Compazine. I think he eats too quickly and doesn't chew well and also eats too much at once. Richie did get some mouth burning and sores. He used 1/2 tsp. salt and 1/2 tsp. of baking soda in warm water and swished this in his mouth often. This helped greatly. Keeping the mouth inside clean is important. A site I belong to on Facebook also suggested Biotene toothpaste and rinse. Haven't tried because the baking soda did the job. Hoping to hear good news from you.
Joanie, It is hard to get to a post or reply on this forum. I wanted to ask you how Richie is doing with the chemo? Denny is home now, since a week ago but I am so worried about his diet too. He does not have gas, he just can eat over a few bites and he is full. They are not supplementing his feedings, in fact the the home health aide just got here yesterday to do an evaluation. They are not any help at all yet. It seems he is losing what little stamina he had. He will not let me take him back to the ER or the nursing home "rehab" and I am needing help with his diet. Keep me posted on Richie too! Thks, Brenda
Hi Brenda, Richie was put on TwoCal Hn. It is a calorie and protein dense nutritional drink. We bought a case of it for $50 and then our insurance OK'd a prescription for it. Richie found it hard to drink a can a day. But he was able to eat it like soup, a few spoons ful at a time. It really did help. Be careful of the Boost and Ensure. Somehow the sugar content in them just doesn't agree with the people who have had stomach removal. I know it is hard. If I say small sips, small bites anymore I think Richie will kill me. But it is sip, sip, sip, and chew, chew , chew. You know not to let him eat and drink together. Drinks should come 30 45 minutes after eating. I wish there was someway we could speak.