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MsJazz/Donna Update
I don't know what to say here or how much to say. I talked to Donna the night before last and she sounded good but tired. Last night Brenda sent me a text saying that Donna was slipping fast, that Johnny had told her it was alright to let go, that they were trying to keep her quiet and still and that she was sleeping most all of the time. I asked Brenda to tell her that we all loved her, that Ronni was still okay, that TC was eating real food again, and that Lori was going to get to see Abby soon. You can only get so much in a text, Brenda was very busy & those were some of the last things Donna had asked about. She said she told Donna those things and that see nodded and seemed aware of what she was nodding to. I have sent Brenda a text today but have had no response. I assume that Donna is needing minute by minute care right now.
She chose to discontinue the nutritional fluids on the 5th. Her Dr told her she would know when it was time to quit them. Her body could not handle them anymore. They said it would be quick, but over 3 wks is not quick in my book, when you are dehydrated and starving to death. Up until yesterday Donna had been attempting to eat ice cream and popsicles, but since her stomach is pushed up in her throat due to the tumor growing so large, she can't swallow anything and it comes right back up. She has had trouble breathing because of the compression on her lungs and her blood pressure was running about 155/120, but they have a BP patch on her now so I think it is coming down. All of that is due to the tumor compressing everything in there and causing problems with those other organs. They are not expecting her to make it through today, but since I have not heard anything yet, I don't know. Hopefully Brenda will get back to me tonight, but I told her not to worry about it because Donna needed her attention and I know Brenda is exhausted both physically and mentally. I am going to take a nap. I will let you all know something as soon as I do.
Love,
Jan
She chose to discontinue the nutritional fluids on the 5th. Her Dr told her she would know when it was time to quit them. Her body could not handle them anymore. They said it would be quick, but over 3 wks is not quick in my book, when you are dehydrated and starving to death. Up until yesterday Donna had been attempting to eat ice cream and popsicles, but since her stomach is pushed up in her throat due to the tumor growing so large, she can't swallow anything and it comes right back up. She has had trouble breathing because of the compression on her lungs and her blood pressure was running about 155/120, but they have a BP patch on her now so I think it is coming down. All of that is due to the tumor compressing everything in there and causing problems with those other organs. They are not expecting her to make it through today, but since I have not heard anything yet, I don't know. Hopefully Brenda will get back to me tonight, but I told her not to worry about it because Donna needed her attention and I know Brenda is exhausted both physically and mentally. I am going to take a nap. I will let you all know something as soon as I do.
Love,
Jan
I haven't heard anything this morning but at about 11 last night Brenda sent me a text saying that Donna was sleeping all of the time now, they have upped her pain meds considerably and of course they have had to put a catheter in her. We all know how fun that is. She has been able to call for Brenda or Johnny when she needs something so I guess she is still alert enough at times. I don't know how you caregivers do it. I am sure they are both frazzled but I haven't heard one complaint out of either of them. If I hear more today I will let you know.
Very powerful post Jan.....I agree totally with all you said..you are a great friend to all of us and even though I really don't know you..I feel like I do. Just wanted to tell you that..((hugz))~~~~Joanne
I know I should write this in a journal instead of here, but I wanted to make sure you ALL read this and I know you'll look at this and you might miss a journal.
When Donna's Dr told her there was nothing more they could do she did offer to send Donna's records to another facility like MD Anderson or Sloan Kettering, but did not think it was worth it. Donna declined, thinking there was no point. I BEGGED her to at least let someone else look at the records, as in most cases they can determine whether they believe they can help you just by looking at your scans & history. She just kept saying maybe she would do that. Well, she didn't and I am angry at her for not doing that, because now that it is to late Donna IS fighting to stay alive. The survival instinct in all of us is strong and we do not let go easily. I'm angry at myself also for not pushing it more. Instead of helping her find the right shade of nail polish and lipstick for her funeral, oh yes, she planned EVERY detail of that, I should have been making her look at other hospitals. Those places are names that are familiar to everyone because they have done extraordinary things, not ordinary things. There is always that ONE hospital that comes up with a new surgical technique or a new combo of drugs that others haven't tried yet. If you don't like the answer you get at MD Anderson, don't assume that it is over. Not until you have had EVERY research hospital look at your records. When it comes to a local level not every onc knows everything. Look at Gail. She'd either be dead or incapacitated right now if she had listened to her onc, instead she went to MD Anderson and they have literally given her a new lease on life. I can't even begin to list all of the cool things she would have missed out on if she had listened to her local Dr. My onc has put me on combo of drugs that none of you have been on because there was a FRENCH study at the end of 2007 that said it works wonders for late stage cancers. He at least doesn't wait for the AMA to tell him it is okay to try other things, he just does it. My point with that is that each Dr knows what they know & they don't know what they don't know. Some bother to read more, find out the latest methods from everywhere, and some just stick with the "pick a treatment out of a hat" method. We HAVE to fight for ourselves and each other. TC would probably not be home enjoying an english muffin with cheese & a nice visit with Chris if she had let that Dr intubate her. She KNEW what she was talking about yet that meany Dr told her family every scary thing he could to get them to convince her to do it. When that didn't work he tried to have her declared incompetent to force her to have it. Given her situation she wouldn't have left that hospital alive if they had done the intubation and she KNEW it. We are all different. We CAN NOT let Drs treat us like a herd animal instead of as individuals. Donna's Dr told her to go home without any IV fluids and she would go quickly that way. Donna did not like that idea and thankfully neither did the hospice people and they put her on not just a saline or glucose IV, but a nutritional supplement IV and that allowed Donna an extra GOOD month that she would not have had. In that month we got to visit, she got to make plans the way she wanted, she got to visit with friends & family, and even get closer to a few of you here on the forum. We may not be Drs, but we have learned a lot from what our friends have gone through, from the research from people like Marty and Alan, (who by the way, have lost their fight to keep their loved ones, but are amazinly still fighting for us) and we KNOW in our gut what is right and what is wrong for us. I want each and everyone of you to promise yourself that you will not go gently into that goodnight. Scru that cr@p. It is like we are lemmings standing at the edge of a cliff and those Drs are all crowding behind us pushing us into the sea. They don't want their failures around to remind them they couldn't help us. There is no dignity in death, only indignities and we can not and I WILL NOT let another one of my friends go without making them do what I should have made Donna do. If I had pushed it she would have listened to me, but now we will never know if she could have had more good years or not.
I am writing this for all of you so please do not tell me what a good friend I am, or how hard this must be for me or that I have to take care of myself. I know you mean well, but it just makes me feel worse, like the big fricking phony friend I am. This needs to be about Donna and what we will do in the future to ensure that we don't let this happen to another one of our friends. Yes, I am tired all of the time, but big deal, I get to go up and take a cold shower (thank you doxil), fix dinner for my husband, crawl into a comfy bed with the man I love, & get up in the morning and enjoy a cup of tea in my greenhouse. I am sorry if this doesn't make sense. I thought I was all cried out about Donna, but I guess not.
There is a new member on the forum Flicka0459 (and for those of you that have asked, yes, she is a real live and very cool person that I can vouch for because I have known her for 50 yrs) and I want you all to look at her photos, you will know which one when you get there and I want you to ask yourself those questions and than ask yourself what you can do or what we can do. Marty tried to get us all together last year to come up with an idea for a newspaper article, but that didn't happen. It was our fault. Some of us were to sick, some didn't really care and others just had to much else going on. There should be NOTHING more important than saving our lives and those of that come after us. I have two daughters and it scares me silly to think that they will get this. Yes, I have the hereditary kind so the odds are good that at least one of them will get this living hell nightmare and by than I want there to be a good screening test and some change in the survival stats. That will not happen unless we, as one have a very loud voice. We cannot afford to whisper anymore.
When Donna's Dr told her there was nothing more they could do she did offer to send Donna's records to another facility like MD Anderson or Sloan Kettering, but did not think it was worth it. Donna declined, thinking there was no point. I BEGGED her to at least let someone else look at the records, as in most cases they can determine whether they believe they can help you just by looking at your scans & history. She just kept saying maybe she would do that. Well, she didn't and I am angry at her for not doing that, because now that it is to late Donna IS fighting to stay alive. The survival instinct in all of us is strong and we do not let go easily. I'm angry at myself also for not pushing it more. Instead of helping her find the right shade of nail polish and lipstick for her funeral, oh yes, she planned EVERY detail of that, I should have been making her look at other hospitals. Those places are names that are familiar to everyone because they have done extraordinary things, not ordinary things. There is always that ONE hospital that comes up with a new surgical technique or a new combo of drugs that others haven't tried yet. If you don't like the answer you get at MD Anderson, don't assume that it is over. Not until you have had EVERY research hospital look at your records. When it comes to a local level not every onc knows everything. Look at Gail. She'd either be dead or incapacitated right now if she had listened to her onc, instead she went to MD Anderson and they have literally given her a new lease on life. I can't even begin to list all of the cool things she would have missed out on if she had listened to her local Dr. My onc has put me on combo of drugs that none of you have been on because there was a FRENCH study at the end of 2007 that said it works wonders for late stage cancers. He at least doesn't wait for the AMA to tell him it is okay to try other things, he just does it. My point with that is that each Dr knows what they know & they don't know what they don't know. Some bother to read more, find out the latest methods from everywhere, and some just stick with the "pick a treatment out of a hat" method. We HAVE to fight for ourselves and each other. TC would probably not be home enjoying an english muffin with cheese & a nice visit with Chris if she had let that Dr intubate her. She KNEW what she was talking about yet that meany Dr told her family every scary thing he could to get them to convince her to do it. When that didn't work he tried to have her declared incompetent to force her to have it. Given her situation she wouldn't have left that hospital alive if they had done the intubation and she KNEW it. We are all different. We CAN NOT let Drs treat us like a herd animal instead of as individuals. Donna's Dr told her to go home without any IV fluids and she would go quickly that way. Donna did not like that idea and thankfully neither did the hospice people and they put her on not just a saline or glucose IV, but a nutritional supplement IV and that allowed Donna an extra GOOD month that she would not have had. In that month we got to visit, she got to make plans the way she wanted, she got to visit with friends & family, and even get closer to a few of you here on the forum. We may not be Drs, but we have learned a lot from what our friends have gone through, from the research from people like Marty and Alan, (who by the way, have lost their fight to keep their loved ones, but are amazinly still fighting for us) and we KNOW in our gut what is right and what is wrong for us. I want each and everyone of you to promise yourself that you will not go gently into that goodnight. Scru that cr@p. It is like we are lemmings standing at the edge of a cliff and those Drs are all crowding behind us pushing us into the sea. They don't want their failures around to remind them they couldn't help us. There is no dignity in death, only indignities and we can not and I WILL NOT let another one of my friends go without making them do what I should have made Donna do. If I had pushed it she would have listened to me, but now we will never know if she could have had more good years or not.
I am writing this for all of you so please do not tell me what a good friend I am, or how hard this must be for me or that I have to take care of myself. I know you mean well, but it just makes me feel worse, like the big fricking phony friend I am. This needs to be about Donna and what we will do in the future to ensure that we don't let this happen to another one of our friends. Yes, I am tired all of the time, but big deal, I get to go up and take a cold shower (thank you doxil), fix dinner for my husband, crawl into a comfy bed with the man I love, & get up in the morning and enjoy a cup of tea in my greenhouse. I am sorry if this doesn't make sense. I thought I was all cried out about Donna, but I guess not.
There is a new member on the forum Flicka0459 (and for those of you that have asked, yes, she is a real live and very cool person that I can vouch for because I have known her for 50 yrs) and I want you all to look at her photos, you will know which one when you get there and I want you to ask yourself those questions and than ask yourself what you can do or what we can do. Marty tried to get us all together last year to come up with an idea for a newspaper article, but that didn't happen. It was our fault. Some of us were to sick, some didn't really care and others just had to much else going on. There should be NOTHING more important than saving our lives and those of that come after us. I have two daughters and it scares me silly to think that they will get this. Yes, I have the hereditary kind so the odds are good that at least one of them will get this living hell nightmare and by than I want there to be a good screening test and some change in the survival stats. That will not happen unless we, as one have a very loud voice. We cannot afford to whisper anymore.
Jan, Thank you so very much for the update. I too am praying that Donna gets her wish soon. I come on here every night and look to see if she is with Jesus yet. I can't imagine how she has hung on for so long. What a remarkable woman!! I know that when God finally decides to bring her home he will be saying "Well done My good and faithful servent!"
Jan, I hope you are taking care of yourself too. You need your rest and some time away just for yourself. Hope you are feeling well. Love, Kasie
Jan, I hope you are taking care of yourself too. You need your rest and some time away just for yourself. Hope you are feeling well. Love, Kasie
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