May 10, 2014 at 1:28 am #82091iowagirlMember
Kris…I can “feel” the relief in your words. I’m so glad.May 9, 2014 at 6:05 pm #82090gavinModerator
That’s great news Kris, thanks for sharing that! Hoping that Mark continues to feel a lot better with lots of improvement!
GavinMay 9, 2014 at 3:06 pm #82089darlaSpectator
Kris, Glad to hear Mark is showing some improvement. Keep the good news coming.
DarlaMay 9, 2014 at 7:47 am #82088pfox2100Member
Kris I am so happy to see and hear that Mark is starting to feel better and had a good day.May 9, 2014 at 4:33 am #82087
Okay well I am going to call it good news. The last three days have been pretty good. He’s been up moving around and doing some things around the house (including tinkering with the clothes dryer which died….ended up buying a new one) and he are three meals today. One was only a Carnation Instant Breakfast but still three meals. And tonight he had a real meal of shrimp stir-fry. I thought it might be too much both how much and what it was but he ate it all.
I really feel like we are turning the corner. He is still sleeping quite a bit but not as much but I don’t care about that. He also went over to his mom’s with me and we checked out her mini-donkeys. I suspect we may have a baby one soon and even got just a tiny bit sunburned.
WooHoo! Thanks all for your positive thoughts and prayers. It obviously worked.May 7, 2014 at 1:12 pm #82086iowagirlMember
Kris…boy do I hear and understand your frustration. Hope that Marian is right….improvement in baby steps. I’m right with you on the lack of the doctor calling personally….and having to re-explain to nurses the problem over and over. It’s one of my biggest frustrations with medical care. You’d think when you get one of the “big ones”, that they could cut some slack and give some more personalized care…..as if we don’t have enough to deal with, living as patients and caregivers with this crap disease.
Hugs from Iowa Girl
Julie T.May 7, 2014 at 6:20 am #82085marionsModerator
Kris…..improvement can come in baby steps. I think that Mark is on his way to better days.
MarionMay 7, 2014 at 3:11 am #82084
Today went a hair bit better. Labs came back and they all look pretty good except his liver enzymes are up a bit….bilirubin is up to 0.9 which is still normal but now the new highest since surgery. The rest were just a hair above normal. I have seen them worse.
I did get him to go on a walk today. Not very far down the road but it was a walk. He tolerated it pretty good so that is a plus. Hopefully I can get him to it more.
Also a little miffed that the doc’s office never called me back this afternoon. It was the third nurse in as many days. And again I had to tell her the whole blood story again?! Then they hadn’t got the labs, then she gave me the wrong phone number and now no call back. I am fuming just a little. Deep breath….this too shall pass.
KrisVMay 6, 2014 at 5:15 pm #82083kris00jSpectator
I’m so sorry to hear about Marks problems. I don’t have much to add except they did warn me I might have reactions to the radiation as long as 6 weeks out.
I didn’t have any serious reactions, but they warned me that I might develop problems.
I hope Mark starts improving. Hopefully the walking helps.
Other than that, all I can say is I’m sending positive thoughts and prayers for healing.May 6, 2014 at 1:32 am #82082
Well after the weekend things still aren’t much better. Weight is down to 170# now. He’s still vomiting periodically which bothers even the doc, he said he shouldn’t be. Mark finally is able to tell me why, not so much nausea but the feeling something is caught in his throat causes him to feel liking he is choking. I asked the doc about maybe an upper endoscopy (camera down his throat). He is considering it but wants to see labs first.
So I drew labs this afternoon and we will see what they look like and go from there. I think he is just a little too content in taking fluids IV so I am going to have to work around that.
I did tell him he needed to take the dog for a walk everyday….even if its down the driveway and back which he did do today so that was good.
KrisVMay 2, 2014 at 8:34 pm #82081markssis2Spectator
Physical Therapy helped my brother so much after radiation and chemo. He lost so much muscle mass and energy during chemo. But since he started PT, he’s been getting out and about and is feeling so much better.
Sending positive thoughts your way!
SisMay 2, 2014 at 7:44 pm #82080
Thank you everyone for your thoughts. Lisa and Jason thanks for sharing your thoughts and story. I think he may be a “little” better today since I got him to eat more. I talked to ONC yesterday and he says all we can do is wait. That some people get beat down more than others so it takes longer. He also said this was one of the roughest things he does to his patients.
I don’t think we are ready for Hospice since we supposedly beat this cancer….hate to think that the cure really was worse that the disease. We have talked about Home Health for physical therapy but he’s a stubborn man.
As for the medical marijuana….he still sees it as an ‘illegal drug’ and says that he’s gone 50 years without using and he’s not going to start now. I think it’s more on principle now rather than any real reason. I am not going to push it for now.
We talked about J-tube but they don’t want to put him through another procedure so if anything it would be TPN but again the labs look good so no need right now.
I guess I just need to be patient….not something I known for
KrisVMay 2, 2014 at 6:05 pm #82078gavinModerator
Sorry to hear of this and I too have no experience personally of the treatment that Mark has had, my dad never went through that so I can’t really add anything here about that. The medical marijuana would probably help get Mark’s appetite up but as you say he won’t even consider that, why not? I too do not think you are too close to things either, just wanted to say that as well.
I wish that there was something else that I could suggest here that would help Mark but please know I am thinking of you both and sending tons of positive thoughts as well.
GavinMay 2, 2014 at 4:29 pm #82079pfox2100Member
Oh Kris I am so sorry you both are having to go through this difficult time. I don’t have experience on this and can’t say much but I do hope he feels better soon. As you know I live in Oregon and we have the medical marijuana as well. I must say for me it has helped specifically with appetite and sleep. Hugs and blessings to you both.
PorterMay 2, 2014 at 11:51 am #82077okansasSpectator
I’m so sorry. My husband so appreciated a warm wash cloth on his forehead and bites of cold lemon-flavored sorbet when he was feeling so bad.
If you can get extra hands for help, such as hospice, then you can spend more time being close with Mark.
From what I’ve read, sometimes our loved ones’ statements that make them sound like they are confused, may instead be symbolic/coded messages about their wishes at this point in their life.
Remember that we are all sending our love and thoughts and prayers for you and Mark — a sweet, loving couple! So glad you have each other.~
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