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Carol Lee S

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  1. Deb, I am so glad things are going so well.. Faith is the answer there is a God!!! Hang in there, Hugs Carol
  2. Ray, My prayers are with you, have someone stay by his side and peace will be with you. I was at Gene's side when he passed and peace was so apparant. May God bless you your Dad and all your family. Carol
  3. Hi all, I have not written since last Tuesday when Gene went to heaven to be wth God. Monday and Tuesday were awful days for him, and Tuesday night rather really early Wednesday morning he passed away next to me in bed. The look of peace was on his face and he was no longer suffering. He was such a courageous man, he battled this disease with determination and always wore a smile. His funeral was a send off fit for the President. The flowers, mass cards, pomp and protocol, eulogies, trumpets in church, fire truck arches, police escort, and military officers at his gravesite were a tribute he definetly deserved. I stood tall and proud with tears steaming down my face. The hundreds of well meaning people that offered there condolences over the three days were there for my daugter, son-in-law and myself. But my beloved Gene was not by my side. My heart is broken. The funeral director, a personal friend of ours told me I can relate this to losing an arm that won't grow back, I need to learn to live with out the arm. He was right, it is an awful feeling, lonely and empty. I keep looking to ask him a question, to remind him of a incident, ask his opinion, or just give him a quick kiss on the cheek. He is gone he will not be forgotten. He will no long suffer and for that I am greatful. I will attempt to remember the wonderful 38 years we spent together. My heart is broken. Thank you all for all your encouragement and your prayers. I wish we never had to meet on this Board, but I am thankful for all your support. Please know that I will keep you all in my prayers. Hugs, Carol
  4. Thank you all for your prayers I know they work. Hospisce will not take Gene as he is on over 5 liters of O2, he must go in the hospital according to there protocol when you get that high and he really doesn't want too. The Doctor refuses Iressa and wants him in Hospice. Catch twenty two I guess. He needs the extra O2 flow for when he has the coughing spasms that last for about 10 minutes then he goes back on the 4 liters again. No good for hospice and so now I found another Doctor to look at him tomorrow (Thank you DEB) if he can start him on Iressa that would be wonderful. We will take care of Gene at home between my daughter (RN) my son in law (paramedic) myself and some friends will donate there time and we will keep him on the O2 and hopefully the Iressa as well. I know I am bucking all odds but you never know until you try. Just need for him to be able to make the 20 mile trip tomorrow he is so weak he hasn't even gotten out of bed for two days, Boost and gatorade have kept him alive. He will be going by ambulance. We are just not ready to give up yet even if the Doc has. The Hospice nurse that came today really encouraged us to give it a try even as weak as he is. Thanks again for your support, and again a request for prayers for a good trip and good results for tomorrow. Hugs, Carol
  5. Thank you Michele, I wish we had a bridge program here. Your information was terrific, now I know I should be fighting as hard as I can for him. Sounds likle you both have been through the mill and are still going strong, where there is breath there is hope!!! Our prayers are with you guys too!!! Carol & Gene
  6. I desperately need your prayers and support. Gene is failing fast. Before the hospital last week we thought things were going along pretty well, however, at this time he is on O2 and last night we started liquid morphine. It got so bad at one point he was on a non rebreather for over 30 minutes. Doc wasn't available yesterday so a covering called back and irderd the morphine. None was available so she told me they would try again on Monday. I called every pharmacy in the county and found some, called her back, had the kids go get it and it gave him some relief. He is on flagyl for the infection he got lastweek and the pill was to big so he would swallow it, and then vomit it back up. Doc said put it in applesauce. He can't even swallow water. I asked for a new script for two 250mg instead of the large 500mg, she said no just cut it in half. The pill isn't scored therefore when you do that the taste lingers and makes you vomit. Finall found a Doc that would change the script. He has tolorated the small pills well. Another hurdle we got over. Now to get him on Iressa, that is my goal today. Not sure how I am going to do that but I am sitting here thinking of ways. He is so weak now he can't even get out of bed. He hasn't eaten in two days and the only fluid that he gets is what we pour down him and we literally do that. Hospice comes in today, not sure if they will allow Iressa, if they don't allow it and I can get it for him, they will have to leave for the time being. Thank you Deb for giving me the strength and conviction to carry on this fight. PS as I am writing theis the Doc called and so no Iressa it would not work and would make matter worse.
  7. Shelly I am so sorry for what your mom is going through right now. Please don't leave the Boards, you do not realize that we all need each other. Your St. Judes post got me through this last week. You posted the Novena to St. Jude and that carried me through a really rotten week. It renewed my faith that was slipping a little bit. It's okay to be angry with God, he loves us anyway but remember the "Footprints in the Sand" poem. Hang in there and while you are angry with God, Gene & I will keep praying for you and your Mom as you have prayed for us in the past. Hugs, Carol
  8. Prayers are coming your way. Carol
  9. Shelly, My husband has heavy phlem whitish and has had it from day one. It just comes all the time. They gave him Robitussin DM which helps a tiny bit. The phlem makes him nausea and sometimes the gag reflux of the phlem makes him vomit. He says the taste if horrible. I keep asking Doctors about it and they say it is from the tumor but never have a solution. Carol
  10. Norme, Sorry to hear your bad news. I researched RFA for Gene and spoke at great length to a Doc in Joe DiMaggio Hospital in Fort Laurderdale Fla. They are very aggressive at this particular hospital and have had good results with the RFA. I think it would be a good thing for you to look into, they are doing this treatment in many places now. Our prayers are with you both. Carol
  11. Hi everyone, Haven't been on the Board this week, we took Gene to the ER Saturday night with rectal bleeding. He presented with diarraha and lots of blood in the bowl. They ran all the tests including a CT scan of the chest (thanks to your posts to me last week I was really in control). They were assuming that the cancer spread to the colon as the Ct showed an inflammed colon. One Doc in the ER that we have become "friends" (we have frequent flyer milage at the ER) told me he wasn't so sure that it was cancer and pushed for the C-dif testing. Unfortunately it takes a few days to come back. We did the test and he admitted Gene using Cipro a broad spetrum antibotic and later to Flagle. Unfortunately he was only the ER doc and they don't have anything to say on the floors. Our oncologist is not affliated with this hospital anymore so we were tossed to the wolves as far as oncology went. C-dif a short name for a baterical infection that I couldn't even begin to pronounce, that comes from taking certain antibiotics Gene was taking Clyndamycin for a supposed chest wheeze. Treatable with another antibitoc called Flagle He was admitted and listed as NPO until they decided what tests they would be performing. I called our oncologist and he said it could very well be C-dif. On Sunday evening the bleeding stopped. They still had him NPO and in bed, I lost it. I requested that the Doctor of record produce himself, I was told he was on vacation and an intern was covering for him. As we were in a teaching hospital (I am on the citizens dvisory board of this hospital) at least a hundred Doctors probed and poked my husband. Finally they produced an attending Doc. WE TALKED!! I asked if his cardioligist or neurologist was notified, and whether the gastroentrologist was going to do any tests. He said they would wait until tomorrow to see what was happening. I said no! enough, take him off NPO give him some food get him out of bed before atrophy sets in and let's get the show going. After a few words I strongly suggested that we all meet that afternoon and set a game plan and that I was including a dear friend who is a Doc on staff of the hospital. Looking back I can't believe I was so vocal. I guess he got the message and at 4pm all eight Docs showed up, we talked they took the NPO off and we agreed on clear liquids for the night (not orange as he vomits from the orange dye) and would start solid foods in the morning. I made them add Boost Breeze to the diet. No further tests were being planned except a rectal which the Gastro guy wanted, I suggested he do now or never. He did the rectal and was happy with the results. All the scans showed the inflammation was much reduced and the bleeding had stopped. I understand the need to wait and see so the bleed didn't start again, but I also understood the need not to loose anymore weight. His liquid diet came up and everything on the tray was orange soda, jello etc. the plate with the cover on had a slip of paper in it where the Boost should be that said "Sorry we are out of your favorite food". I was on a roll this time. I made at a call to Dietary Care and I got a very rude girl who told me that Boost was not something I could order a Doctor had to order. That was the straw that broke the back. I went marching right down to the Nurse Manager's office and she was extremely helpful and made the appropriate calls. They were truly out of Boost; something that should not happen on a cancer floor. I got Gene the liquid diet he needed for the night. The next morning I called him before I went to work to make sure that the food showed up. By 9am still no food. at 10am they sent up a Bagel with coffee, not even decaf. Great meal for a cardiac/cancer patient. I left work and made my way to the CEO's office, his Secretary met me at the door apologizing profusely, not enought I said, he needs food and this problem needs to be addressed; I am complaining, what about the other people who aren't able to. I then found out how many people went without Boost yesterday. At noon, Gene's lunch tray came up, my heavens you thought he was going on a five day camping trip. Food was all over the place, still no Boost. To make a long story short, Boost is now a floor staple. He was in the hospital for four days and was released last night at 5pm only to return back at 7pm for 102 fever. We came home again last night at 3am. All the blood work, Xrays and samples did not indicate a thing wrong. He has had enough of the testing probing etc. His veins are showing wear and tear and he is thinking about a port. The low grade fever comes and goes, he is very tired but did eat breakfast at 11am and dinner tonight. We now have O2 in the house to use as needed. I am keeping the fluids going along with the meds. A positive side to this saga was the Chest scan showed that the tumor in the left lung shrank a bit but unfortunately many more Flufflies appeared in the right lung. By the way, our Oncologist called me at the hospital I explained what was happening he said the direction that the Docs were taking seemed to be a good approach and I should keep him informed. (yeah right the direction they were taking was leading nowhere until I intervened) Not exactly what I was looking for in a Doc. I guess it is time to switch Docs as he is to far to travel to in an emergency and actually he is more interested in getting Gene on hospice. The hospital we were at is designated a cancer center, our oncologist was treating us there originally but then move to Sloan, we followed him. I am going to research a few other centers this evening. If I find one I will request a leave of absence from work for a few weeks and attempt to travel there if it would help. Okay now I am looking at this post of ramble and realize that I should be all talked out but of course I'm not. I will continue to be his advocate. He has always been an advocate for everyone else. He is such a very special person, so giving, never asking for anything and always upbeat, even when the tears come streaming down my face as I look at him struggling to make the best of this rancid disease, he smiles and says its okay honey we'll beat this monster. God I love those hugs!!! Anyway Thank you for listening and remember C-dif is a treatable infection. Carol PS Gail and Deb sending you a PM
  12. Does anyone else have the problem with coughing up constant flem? Gene is constantly coughing up whitish flem and now it is to the point that it often makes him vomit. He is taking Robotussin DM and Tylenol with Codiene and just today came off the third type of antibotic. I am assuming it is from the tumor. Anxious to see if there is a suggestion out there for him, the doctor doesn't offer much except what he is on right now. He has tried Tessalone (sp?) tablets but they didn't seem to work either. It is hard enough for him to eat as it is and of course he is waking up almost every hour to spit this junk up. This is not a good formula for keeping his health up between the lack of sleep and the decreased appetite. I have gotten him to forgo the cardiac diet for the time being, but even at that the flem is making it difficult. Any suggestions would be greatly appreciated, these Boards are my life line to sanity, thank you all for being there. Carol
  13. Hi all, I just emailed the Pres. let's see what he has to say. I made the original post suggesting to email him, I did it from work so I guess It comes up as "guest" sorry about that. I am also trying to figure out how to get my scanner to work to get our picture up. By the time I figure it out Gene's hair will be grown back and mine will be completely gray! Praying for us all. Carol
  14. Shelly, Thanks for sharing your St. Jude Novena. I will be using it, St. Jude has alwys been one of my favorites. You just reminded me how powerful he really is!!! Thank you Carol
  15. Deb, We are so excited for you and your family. Love reading your posts, they are always welcomed and never too long for me. All your thoughts and reports are giving me knowledge and courage to follow up on the things that I feel silly asking or doing. It makes everything seem normal for what we are all going through. Isn't it wonderful to have a Doc that will listen. That's how survivors are made, by Docs listening and encouraging their patients to go forward fighting. Enjoy this wonderful week end and may it spill over into endless months of continued weight gain and improved health for your Dad. Hugs, Carol
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