Hi Friends,
On Thursday Dr. Ebrahim decided to involve a Palliative Care person in Anne's situation. Dr. Cindy Frost visited us around noon Thursday. She had a good approach and we liked her very much. She talked about the amounts of drugs Anne has been using as of late, and her recommendations for changes. She was on board with our plan with Dr. Ebrahim to go home the next day, it being Friday.
As an aside: I myself could've used some good drugs after the Lakers beat the Celtics by one point in overtime this evening. I'm used to it tho, it's nothing different than any other regular season Laker game at Boston for the past 6-7 years.
Anyway, after Dr. Frost analyzed the amount of Dilotted pain med Anne had used, she recommended a larger dose of the Fentanyl patch. She increased that up to 75 micrograms every 3 days and would have that first patch applied to Anne's arm within minutes. This way she could evaluate it's affect in the morning. 75 micrograms is twice the then current amount, 37.5.
The Dilotted would continue to be available 'as needed' for pain. The hope is that the amount of Dilotted requested will be reduced.
Dr. Frost also made changes to the medicines Anne uses to control the bowell. I don't want to get into the details but I believe it is called Lactulose, that still with stool softeners.
She also prescribed a new Nausea med (Haloperidol) which is scheduled every 8 hours. Plan is to get a handle on the nausea, with the Ativan and Zofran still available for backup, as needed.
She also prescribed Dexamethasone (Decadron), a corticosteroid, similar to a natural hormone produced by your adrenal glands. It often is used to replace this chemical when your body does not make enough of it. It relieves inflammation (swelling, heat, redness, and pain) and is used to treat certain forms of arthritis; skin, blood, kidney, eye, thyroid, and intestinal disorders (e.g., colitis); severe allergies; and asthma. Dexamethasone is also used to treat certain types of cancer. This one can give Anne more energy too, and she'll have to lay off of it for awhile after she tries it for a month or so.
She has coumadin, a blood thinner, in case there are any remaining blood clots needing to be treated. This will stop some day.
Overall plan is to control her pain, her nausea, her bowell, and reduce all of the extra bodily fluid in her tissues.
Anne was so happy to get home Friday at around 5pm. The last thing they did at the hospital was to remove her picc line. Don't want any chance of infection from that. So, it is gone.
Anne did well at home all evening. We organized her meds as best we could. Once we went to bed, I slept all night till 7am. I heard her snoring when I woke up but she said she really woke at 6am. She had stepped from the bed to the commode a handful of times during the night, never bothering me. Yes, she's still using 2 diuretics (Lasix and Spironolactone) which help reduce the fluid still in her tissues. When Anne got up this morning she commented on how her right ankle was not as swollen as it was at bedtime. I was glad for that, because I noticed it was definately swelling up last night.
Today, Saturday, Anne has done well at home. Her weight is down 69 pounds from Jan 17, the day she moved from Springbrook back to MMC. She needed pain meds on waking up today.
I prep'd a bowl of cereal for her and she needed nausea meds after that. I'm sure I served her too much. Certainly more than the little yellow box of cherrios you get in the hospital. Shame on me, I'll learn.
We had a very late lunch do to having company over, and Anne needed pain meds after that. She had beef stew for supper and a little desert, and did not have pain following that. She's doing some walking laps around the house right now. It is 7pm.
We hope for a great evening. It feels like everybody here is happy. Beasley, Dixie, Anne and me. the household is back together, and we have our glue here. Dixie must feel like she died and went to heaven. I think she had the toughest time with Anne being hospitalized pretty much from Nov 28 to Feb 10, give or take a week or so.
If you wish to visit Anne at home please do call ahead and check with her, and plan to stay no longer than 30 minutes. Thank you. And thanks again for all your cards, well wishes, and prayers. We continue to pray for Anne's comfort, well being, and we've not given up on asking for the miracle of asking the Lord to dry up the cancer. We know that He can do that.
PS I don't plan on doing very much blogging going forward now that Anne is home from the hospital. I want to thank all of you who have been interested in Anne's progress, and have kept up on that by reading this. Thank you for being there. Perhaps now we can pick up where we left off with our more normal, personal, close, friendships.
Saturday, February 11, 2012
Wednesday, February 8, 2012
Wednesday, 1pm
Hi Friends,
On Tuesday, Dr. Ebrahim expressed concerns about our ability to manage Anne's pain at home, but at the same time he told us to go ahead and plan to go home on Friday. He's thinking hard on the idea, trying to make it happen. His concern is mostly with her pain overnight.
Low and behold, last night at 3am Anne had an incredibly sharp chest pain which woke her up and scared her. She was pretty shook up about it this morning when I got here at 8:45am. Dr. Ebrahim had already been here by then, so I chased him around and he came back to see us together.
He said the pain is coming from right where the tumor is and where the stents are. Of course he's real concerned about that going forward, especially not knowing whether Anne will ever get strong enough to fight the disease. I just continue to think positive and have hope. There's just no other way to think about it short of feeling overwhelmed and discouraged. Can't have that!
Yesterday late morning he increased her Fentanyl patch from 12.5mg, up by 25mg, to 37.5mg. Today he has changed her IV Dilotted pain med to oral form. Anne has been asked to stay ahead of the pain and ask for meds as soon as she feels it coming. The oral pain meds take longer (20-30 mins) to work, but they last longer in duration than the IV version. We continue to seek and find a balance of meds to go home on.
It's now almost 2pm and Anne has requested pain meds twice since I got here. I'm thinking that the extra Fentanyl patch medicine didn't kick in till late morning today. That's my way of trying to explain the early request. The later request was due to her choice of foods at noon. Anne has eaten cottage cheese the past few days, probably because it's comforting to eat, however it has made her sick each time. This is a hard game to watch, and I'm sure much harder to play. We'll do our best. I'm not looking forward to asking her not to eat what she wants. I'm starting to think that Anne will not be able to have much more than snacks going forward. Attempts at meals just are not working. Anne got dressed in her own clothes today though, she is ready and wanting to go home, and I'm ready to bring her.
Anne has now lost about 60 lbs since Jan 17. It's a combination of fluid and regular pounds. She isn't eating alot of food, and according to the Dr. there's still some fluid to get rid of. She continues to walk around the block here, many times per day, using her new walker.
Please pray for her, for no more setbacks, and that we'll discover a good med schedule that will work to combat her pain around the clock. Also, pray that we'll be able to combat the side effects of the narcotics. I pray that the change of scenery at home will be helpful for her too.
On Tuesday, Dr. Ebrahim expressed concerns about our ability to manage Anne's pain at home, but at the same time he told us to go ahead and plan to go home on Friday. He's thinking hard on the idea, trying to make it happen. His concern is mostly with her pain overnight.
Low and behold, last night at 3am Anne had an incredibly sharp chest pain which woke her up and scared her. She was pretty shook up about it this morning when I got here at 8:45am. Dr. Ebrahim had already been here by then, so I chased him around and he came back to see us together.
He said the pain is coming from right where the tumor is and where the stents are. Of course he's real concerned about that going forward, especially not knowing whether Anne will ever get strong enough to fight the disease. I just continue to think positive and have hope. There's just no other way to think about it short of feeling overwhelmed and discouraged. Can't have that!
Yesterday late morning he increased her Fentanyl patch from 12.5mg, up by 25mg, to 37.5mg. Today he has changed her IV Dilotted pain med to oral form. Anne has been asked to stay ahead of the pain and ask for meds as soon as she feels it coming. The oral pain meds take longer (20-30 mins) to work, but they last longer in duration than the IV version. We continue to seek and find a balance of meds to go home on.
It's now almost 2pm and Anne has requested pain meds twice since I got here. I'm thinking that the extra Fentanyl patch medicine didn't kick in till late morning today. That's my way of trying to explain the early request. The later request was due to her choice of foods at noon. Anne has eaten cottage cheese the past few days, probably because it's comforting to eat, however it has made her sick each time. This is a hard game to watch, and I'm sure much harder to play. We'll do our best. I'm not looking forward to asking her not to eat what she wants. I'm starting to think that Anne will not be able to have much more than snacks going forward. Attempts at meals just are not working. Anne got dressed in her own clothes today though, she is ready and wanting to go home, and I'm ready to bring her.
Anne has now lost about 60 lbs since Jan 17. It's a combination of fluid and regular pounds. She isn't eating alot of food, and according to the Dr. there's still some fluid to get rid of. She continues to walk around the block here, many times per day, using her new walker.
Please pray for her, for no more setbacks, and that we'll discover a good med schedule that will work to combat her pain around the clock. Also, pray that we'll be able to combat the side effects of the narcotics. I pray that the change of scenery at home will be helpful for her too.
Tuesday, February 7, 2012
Tuesday Update, 1pm
Hi Friends,
With a new combination of drugs having been started Saturday it's hard to know exactly what's going on and where we are.
Anne had the headaches we spoke about, but they seem to be gone now. I suppose they could be attributed to 'withdrawal' from the Oxycodone which was discontinued. Let's hope those headaches are gone for good.
Last night Anne called me as I drove home, around 8:45pm. She said she was having chest pains, new pains, and she was scared. The nurses were tending to it tho, but it was alarming for me, causing me to wonder what is going on. She has had more of that sensation since then, but nothing to scary.
Today she got dressed, had a shower, and all of that. She looks nice and is getting ready to head out for a walk around the corridor. We expect to see Dr. Ebrahim within the next hour or so. I haven't seen him since last Thursday. I'm sure today we'll be discussing 'discharge'. He'll ask us if we are each ready to go, etc.. We'll need to change the IV meds to oral, and discuss the differences in the timing of use of those. And, we'll need to make sure we'll have the drugs we need when we get there.
We need to discuss the chest pains as of late. Also, his assessment of the effectiveness of the 12.5mg Fentanyl patches started maybe last Thursday. Anne has used alot of Dilotted the past 3 days, so I wonder if 12.5mg is enough for the patch. If not we could jump to 25mg.
Yesterday I purchased a new power recliner for Anne. It will be beneficial for both of us. For me, I won't have to jump out of my chair and bend over to pull a lever up or down every time she needs to move. The chair isn't too big, so I think she'll like it. Maybe it will end up in the bedroom and be an alternative place for her to sleep. She used to go out to the living room to sleep on her recliner there when she woke up in the middle of the night.
I don't think I mentioned that we watched the SuperBowl together Sunday night. We had a pretty good day that day, and prior to gametime we had some chicken wings I grabbed from Bingas Wingas, barbeque garlic, best in town. Anne ate 3 and I ate 9. NOBODY GOT SICK !!
Yesterday, Monday, we got off schedule for eating, so lunch was after 3pm. Anne had a hankering for Mexican food, so I made my way to Margarettaville and returned with 2 appetizers she had picked out on-line. Bad idea, Anne was totally miserable for some time after that. Later that night she only had a tiny amout to eat for supper after getting over that sickness. I don't think we'll be ordering any food from anywhere near the border for some time. She said it wasn't worth it. Maybe that's what gave her the chest pains later last night.
So now, we're pretty anxious about what Dr. Ebrahims expectations will be. He's due in here any minute. Her lunch made her uncomfortable earlier and she's sleeping that off now. So she won't be exactly cheerful when he comes in. I'd like to see Anne go home on Friday. Anne is apprehensive about being asked to go home as early as tomorrow(Weds). She's doesn't feel ready. I don't think that will happen. We'll have to wait and see and will let you know.
Have a good evening everybody !!
With a new combination of drugs having been started Saturday it's hard to know exactly what's going on and where we are.
Anne had the headaches we spoke about, but they seem to be gone now. I suppose they could be attributed to 'withdrawal' from the Oxycodone which was discontinued. Let's hope those headaches are gone for good.
Last night Anne called me as I drove home, around 8:45pm. She said she was having chest pains, new pains, and she was scared. The nurses were tending to it tho, but it was alarming for me, causing me to wonder what is going on. She has had more of that sensation since then, but nothing to scary.
Today she got dressed, had a shower, and all of that. She looks nice and is getting ready to head out for a walk around the corridor. We expect to see Dr. Ebrahim within the next hour or so. I haven't seen him since last Thursday. I'm sure today we'll be discussing 'discharge'. He'll ask us if we are each ready to go, etc.. We'll need to change the IV meds to oral, and discuss the differences in the timing of use of those. And, we'll need to make sure we'll have the drugs we need when we get there.
We need to discuss the chest pains as of late. Also, his assessment of the effectiveness of the 12.5mg Fentanyl patches started maybe last Thursday. Anne has used alot of Dilotted the past 3 days, so I wonder if 12.5mg is enough for the patch. If not we could jump to 25mg.
Yesterday I purchased a new power recliner for Anne. It will be beneficial for both of us. For me, I won't have to jump out of my chair and bend over to pull a lever up or down every time she needs to move. The chair isn't too big, so I think she'll like it. Maybe it will end up in the bedroom and be an alternative place for her to sleep. She used to go out to the living room to sleep on her recliner there when she woke up in the middle of the night.
I don't think I mentioned that we watched the SuperBowl together Sunday night. We had a pretty good day that day, and prior to gametime we had some chicken wings I grabbed from Bingas Wingas, barbeque garlic, best in town. Anne ate 3 and I ate 9. NOBODY GOT SICK !!
Yesterday, Monday, we got off schedule for eating, so lunch was after 3pm. Anne had a hankering for Mexican food, so I made my way to Margarettaville and returned with 2 appetizers she had picked out on-line. Bad idea, Anne was totally miserable for some time after that. Later that night she only had a tiny amout to eat for supper after getting over that sickness. I don't think we'll be ordering any food from anywhere near the border for some time. She said it wasn't worth it. Maybe that's what gave her the chest pains later last night.
So now, we're pretty anxious about what Dr. Ebrahims expectations will be. He's due in here any minute. Her lunch made her uncomfortable earlier and she's sleeping that off now. So she won't be exactly cheerful when he comes in. I'd like to see Anne go home on Friday. Anne is apprehensive about being asked to go home as early as tomorrow(Weds). She's doesn't feel ready. I don't think that will happen. We'll have to wait and see and will let you know.
Have a good evening everybody !!
Sunday, February 5, 2012
Super Sunday, 5pm
Hi All,
Happy Super Sunday and Go Pats!!
I called Anne last night around 9:30pm after I got home and she wasn't feeling very well.
I called this morning around 8:30, same thing. However, she had gotten up quite a bit earlier than that and taken a walk around the block up here.
I got in today around 11:30 and she was sitting here chatting with her nurse having a smile on her face.
She had a grilled cheese sandwich and cup of tomato soup for lunch and that brought on severe belly pain and nausea.
It's late after noon now and we're getting ready to have some snacks and watch the pre-game stuff.
The on-call doctor this weekend (Dr. Diesler) has brought in a new set of eyes onto Anne's situation, and some fresh ideas in regards to the drug list available to Anne. With all of the 'belly pain', headaches, and sickness as of late, she is trying a slightly different combination of drugs. It involves a Fentanyl patch, and the more liberal use of the Dilotted. Anne likes the Dilotted. We're experimenting with eliminating the Oxycodone altogether, thinking it might be what is upsetting Anne's belly, especially if it is taken on an empty stomach. Anne has been using it like candy for the past 2 years. The hope is that if we can use an effectively sized Fentanyl Patch that it might provide enough coverage for pain so that Anne may not request so much Dilotted. No more Oxycodone for the time being. Anne and I like the plan and I pray that we can make it work.
Go Pats !!
Happy Super Sunday and Go Pats!!
I called Anne last night around 9:30pm after I got home and she wasn't feeling very well.
I called this morning around 8:30, same thing. However, she had gotten up quite a bit earlier than that and taken a walk around the block up here.
I got in today around 11:30 and she was sitting here chatting with her nurse having a smile on her face.
She had a grilled cheese sandwich and cup of tomato soup for lunch and that brought on severe belly pain and nausea.
It's late after noon now and we're getting ready to have some snacks and watch the pre-game stuff.
The on-call doctor this weekend (Dr. Diesler) has brought in a new set of eyes onto Anne's situation, and some fresh ideas in regards to the drug list available to Anne. With all of the 'belly pain', headaches, and sickness as of late, she is trying a slightly different combination of drugs. It involves a Fentanyl patch, and the more liberal use of the Dilotted. Anne likes the Dilotted. We're experimenting with eliminating the Oxycodone altogether, thinking it might be what is upsetting Anne's belly, especially if it is taken on an empty stomach. Anne has been using it like candy for the past 2 years. The hope is that if we can use an effectively sized Fentanyl Patch that it might provide enough coverage for pain so that Anne may not request so much Dilotted. No more Oxycodone for the time being. Anne and I like the plan and I pray that we can make it work.
Go Pats !!
Saturday, February 4, 2012
Weekend Update, Sat., 3:30pm
Hi friends,
The roller coaster continues. Anne continues to ride with the ups and downs.
Yesterday morning she couldn't talk on the phone at around 9am because of a migrane like headache. She came down with head pain around 4am. The doctor was very concerned and ordered a CT Scan of her head, so I rushed in. As you know, I hate for her to have to wait downstairs alone where the Scans are done.
We'll, I missed that part anyway. She was back in her room when I got in here around 11. The scan came out fine, nothing bad found. However, she didn't feel any better until late in the afternoon today. It wasn't just the headache, also lots of nausea and belly pain. She's really having a hard time, sick in some way each and every day. Alot of the sickness has alot to do with her choice of things to eat, and another cause is the narcotics causing problems with her bowells. With that, I still think she may be close to going home. Once home we must determine which foods make her sick. By doing that at least there will be less of a need for pain meds, and it all should help with her constipation problem too. I hope that, along with the change of scenery, will help her to get along better. Hopefully the nice weather will continue so we can get outdoors and get some walking exercise too.
So, yesterday started off badly. By supper time Anne was doing OK. I actually left early and went over to a Portland Pirates hockey game. I was lucky enough to be invited by a friend. It was a treat.
This morning I called Anne at around 8:30. She wasn't feeling well and had just asked for pain meds. She was fixing to have a shower and said she'd call me back after that. When she did I was ready to head in town. I left Dixie outside in the sun today. Dana would check on her early afternoon and Laurie will be over to see her at supper time.
When I got in I said to Anne that I wanted to hang her clothes up so they'd be ready for her when she needed to find them. She said, "might not be too soon." I asked why and she said she had the 'eye pain' again starting at 4am this morning. She said it still hurt. I asked if the 'eye pain' is what we were calling a headache yesterday, and she said 'Yes'. She covered her right eye and cheek and explained that that was where it hurt. She was finishing her lunch when I got here. She seemed to be doing OK then, and she said she had a pulled pork sandwich from the menu. She had cut peaches for desert.
A little while later she was miserable. She got pain and nausea meds and slept from 11:30am till 3:30pm. She woke up feeling lousy and asking for more of each med. I think the pulled pork is the culprit. She is cursing food at the moment, and swearing that she'll be more careful making her meal choices going forward. Yesterday she was looking forward to some certain things to eat for the SuperBowl game, and today she is saying 'no way'.
I hope she'll have a good evening tonight and a better morning tomorrow. Perhaps I can write some better news here in the blog on Super Sunday. I hope the headaches are explained soon too. We have no clue what is causing those fhe past 2 days. Sometimes I wonder just how much Anne can take.
At this point I'm concerned, and I know she is too, about coming home. I look forward to it though, and I'll do my best to take care of her and make her comfortable.
Have a good weekend everybody, and Go Pats!!
The roller coaster continues. Anne continues to ride with the ups and downs.
Yesterday morning she couldn't talk on the phone at around 9am because of a migrane like headache. She came down with head pain around 4am. The doctor was very concerned and ordered a CT Scan of her head, so I rushed in. As you know, I hate for her to have to wait downstairs alone where the Scans are done.
We'll, I missed that part anyway. She was back in her room when I got in here around 11. The scan came out fine, nothing bad found. However, she didn't feel any better until late in the afternoon today. It wasn't just the headache, also lots of nausea and belly pain. She's really having a hard time, sick in some way each and every day. Alot of the sickness has alot to do with her choice of things to eat, and another cause is the narcotics causing problems with her bowells. With that, I still think she may be close to going home. Once home we must determine which foods make her sick. By doing that at least there will be less of a need for pain meds, and it all should help with her constipation problem too. I hope that, along with the change of scenery, will help her to get along better. Hopefully the nice weather will continue so we can get outdoors and get some walking exercise too.
So, yesterday started off badly. By supper time Anne was doing OK. I actually left early and went over to a Portland Pirates hockey game. I was lucky enough to be invited by a friend. It was a treat.
This morning I called Anne at around 8:30. She wasn't feeling well and had just asked for pain meds. She was fixing to have a shower and said she'd call me back after that. When she did I was ready to head in town. I left Dixie outside in the sun today. Dana would check on her early afternoon and Laurie will be over to see her at supper time.
When I got in I said to Anne that I wanted to hang her clothes up so they'd be ready for her when she needed to find them. She said, "might not be too soon." I asked why and she said she had the 'eye pain' again starting at 4am this morning. She said it still hurt. I asked if the 'eye pain' is what we were calling a headache yesterday, and she said 'Yes'. She covered her right eye and cheek and explained that that was where it hurt. She was finishing her lunch when I got here. She seemed to be doing OK then, and she said she had a pulled pork sandwich from the menu. She had cut peaches for desert.
A little while later she was miserable. She got pain and nausea meds and slept from 11:30am till 3:30pm. She woke up feeling lousy and asking for more of each med. I think the pulled pork is the culprit. She is cursing food at the moment, and swearing that she'll be more careful making her meal choices going forward. Yesterday she was looking forward to some certain things to eat for the SuperBowl game, and today she is saying 'no way'.
I hope she'll have a good evening tonight and a better morning tomorrow. Perhaps I can write some better news here in the blog on Super Sunday. I hope the headaches are explained soon too. We have no clue what is causing those fhe past 2 days. Sometimes I wonder just how much Anne can take.
At this point I'm concerned, and I know she is too, about coming home. I look forward to it though, and I'll do my best to take care of her and make her comfortable.
Have a good weekend everybody, and Go Pats!!
Thursday, February 2, 2012
Thursday, 6pm
Hi Friends,
Well, Anne hasn't felt well today. She's had alot of nausea. We discussed this with Dr. Ebrahim when he came around 2pm, and he's thinking it may be the Augmentin, an anti-biotic that he ordered yesterday to help fight the UTI and bladder infections Anne had going on. It is known for causing nausea, so we hope he was right. He has discontinued that drug from Anne's list.
Unfortunately, he was planning to send Anne home tomorrow, and how he has changed his mind. I don't know if she could go home on Saturday or Sunday or not. Anne can ask him in the morning. He gets here so early I am usually not here yet.
Other than that, Anne is good, she continues to walk and exercise. She said the stairs really sent her for a loop yesterday, but she needs to work thru that. Anne is having her share of pain during the day still, and she's using a mixture of medicines. Hopefully we can make some sense out of all of this after she gets home. Just getting home may make her feel alot better. Let's hope so.
Well, Anne hasn't felt well today. She's had alot of nausea. We discussed this with Dr. Ebrahim when he came around 2pm, and he's thinking it may be the Augmentin, an anti-biotic that he ordered yesterday to help fight the UTI and bladder infections Anne had going on. It is known for causing nausea, so we hope he was right. He has discontinued that drug from Anne's list.
Unfortunately, he was planning to send Anne home tomorrow, and how he has changed his mind. I don't know if she could go home on Saturday or Sunday or not. Anne can ask him in the morning. He gets here so early I am usually not here yet.
Other than that, Anne is good, she continues to walk and exercise. She said the stairs really sent her for a loop yesterday, but she needs to work thru that. Anne is having her share of pain during the day still, and she's using a mixture of medicines. Hopefully we can make some sense out of all of this after she gets home. Just getting home may make her feel alot better. Let's hope so.
Wednesday, February 1, 2012
Wednesday, 5pm
Hi Friends,
Well, the blood test results are in and we've learned that Anne has a bladder infection as well as a UTI. These are bein treated and Dr. Ebrahim is not overly concerned about them.
He is coming back tomorrow in the afternoon, and in the meantime he's thinking about Anne's next move and the timing of it. I'm thinking she will be going home on Friday. I could be wrong. I asked Anne if she is concerned about coming home, and she responded with a question to me, whether I am concerned about taking care of her at home. I said 'No'.
Anne and I had veggie burgers for lunch today with all the fixings. She finished her burger, and tried to squeeze in some (guess what?) hummus. Well, either the veggie burger, or the extra hummus made her miserably sick for this afternoon. She had taken Dillotted before eating but it didn't do the trick this time. The eating mystery continues. We'll simply have to write down everything that goes into her mouth once we get home and try to find a pattern in there in terms of what's good and what's bad. Sometimes I feel that one extra bite might put her over the limit, like trying to follow the veggie burger with hummus today. Hopefully we can figure this mystery out over time. As you've heard me say over and over, I wish the Lord had taken some of her appetite when he took her esophagus.
Anne took a short walk today with no walker. Impressive. Then late this afternoon Anne and Corina from PT went to test the stairway for the first time. Anne climbed and descended 4 stairs and was pretty tired and dizzy from it. This will get better with practice. Anne is sleeping in the recliner next to me now as I write this.
Anne (and I) haved received tons of cards from all of you, all of our friends, old and new, and we wants to let you know how much we appreciate those. They have each one been a blessing to her spirits. Thank you everybody!!
There's not a heck of alot going on in here these last couple of days, it's almost getting boring, no IV's, no electronics (knock on wood!), and there seems to be no hurry for anyone to kick Anne out of here. It's good, that's what Anne needs. She's pretty much still in slow motion as of late, and that's not a bad thing, but she is getting more and more back to normal and 'with it' all the time. Today she mentioned being challenged with her spelling. I think she is happy that no one is chasing her out of here this time. Lord know a mistake was made last month on that note.
Aside from all of that, I myself had an awful night of sleep last night. It felt like I was awake all night, but it may have been just a flash in time. I'll never know. Anyway, I was dreaming that I was blogging from the SuperBowl Game. I was having a terrible time, struggling to convey what was going on in the game in writing, and I couldn't figure out how to make sense of it. I continued to wake up, telling myself to "STOP", that it didn't make any sense what I was doing, that the game was not being played yet, rather next Sunday. But, I'd go back to sleep, toss and turn, and struggle to try and write a conversational blog about the game again and again. It was terrible. I know what you're asking, and 'No', I don't know who won yet.
Well, the blood test results are in and we've learned that Anne has a bladder infection as well as a UTI. These are bein treated and Dr. Ebrahim is not overly concerned about them.
He is coming back tomorrow in the afternoon, and in the meantime he's thinking about Anne's next move and the timing of it. I'm thinking she will be going home on Friday. I could be wrong. I asked Anne if she is concerned about coming home, and she responded with a question to me, whether I am concerned about taking care of her at home. I said 'No'.
Anne and I had veggie burgers for lunch today with all the fixings. She finished her burger, and tried to squeeze in some (guess what?) hummus. Well, either the veggie burger, or the extra hummus made her miserably sick for this afternoon. She had taken Dillotted before eating but it didn't do the trick this time. The eating mystery continues. We'll simply have to write down everything that goes into her mouth once we get home and try to find a pattern in there in terms of what's good and what's bad. Sometimes I feel that one extra bite might put her over the limit, like trying to follow the veggie burger with hummus today. Hopefully we can figure this mystery out over time. As you've heard me say over and over, I wish the Lord had taken some of her appetite when he took her esophagus.
Anne took a short walk today with no walker. Impressive. Then late this afternoon Anne and Corina from PT went to test the stairway for the first time. Anne climbed and descended 4 stairs and was pretty tired and dizzy from it. This will get better with practice. Anne is sleeping in the recliner next to me now as I write this.
Anne (and I) haved received tons of cards from all of you, all of our friends, old and new, and we wants to let you know how much we appreciate those. They have each one been a blessing to her spirits. Thank you everybody!!
There's not a heck of alot going on in here these last couple of days, it's almost getting boring, no IV's, no electronics (knock on wood!), and there seems to be no hurry for anyone to kick Anne out of here. It's good, that's what Anne needs. She's pretty much still in slow motion as of late, and that's not a bad thing, but she is getting more and more back to normal and 'with it' all the time. Today she mentioned being challenged with her spelling. I think she is happy that no one is chasing her out of here this time. Lord know a mistake was made last month on that note.
Aside from all of that, I myself had an awful night of sleep last night. It felt like I was awake all night, but it may have been just a flash in time. I'll never know. Anyway, I was dreaming that I was blogging from the SuperBowl Game. I was having a terrible time, struggling to convey what was going on in the game in writing, and I couldn't figure out how to make sense of it. I continued to wake up, telling myself to "STOP", that it didn't make any sense what I was doing, that the game was not being played yet, rather next Sunday. But, I'd go back to sleep, toss and turn, and struggle to try and write a conversational blog about the game again and again. It was terrible. I know what you're asking, and 'No', I don't know who won yet.
Tuesday, January 31, 2012
Tuesday, 5pm
Hi all readers,
Not sure I'd menioned that on Saturday Anne had a low grade fever for awhile. It went away with some Tylenol.
On Sunday she had a good quiet day, sleeping alot, and she walked one lap around the 400 foot block, late afternoon, without stopping. I don't remember much else happening on Sunday, maybe it will come to me as I write.
On Monday another low grade fever was detected and it got the doctors attention. Around 7pm we learned that Dr. Ebrahim had ordered a chest xray, and blood work.
Anne also learned that there is concern for 2 blood clots. One is near the pelvic area, and the other in the chest. It seems that these are expected, maybe routine whenever someone spends alot of time in the hospital and it not up and around much. These are treated with blood thinners, but doctors do not spend alot of time tracking or studying them to see if they are dissolving. It's seems like they are common, treated casually. They can be dangerous though if they make it to the lungs, especially if they are large. Remember David Bloom from NBC news. Anyway, Anne is being treated for these.
Last night Anne and I enjoyed hamburgers from Room Service. Anne ordered us each one, with cheese, and loaded with all the condiments you can imagine. I cut Anne's burger in half and I got upset when she went for the second half. She was enjoying it so much I was certain she'd soon be in severe pain, calling for meds, and that I'd be here late all worried about her. Well, the burgers were fantastic, and big, she was still raving about it today, and, she never became sick after eating the whole thing. I'd have bet money otherwise.
At around 8pm we headed down to have the chest xray done. I stayed with her because I don't like her having to go down to the basement alone where the xray dept is. It's kinda the older part of the hospital. They kind of drop you in a parking area to wait, then they call your number and you go in, then they park you again until the transport person comes to take you back to your room. Anyway, it went quickly. We were back in the room by 9pm. Our concern was that the xray might reveal something serious causing the low grade temps, such as pneumonia or something like that.
Today we learned the good news that there is no pneumonia to be found. A urine test did conclude that Anne has another UTI. Perhaps caused by the catheter being used for so many days? Anyway, all good news. The UTI can easily be treated.
Blood tests results from last nights draw were not available today. So, we hope those tests do not show any other infections beyond the UTI. Dr. E. warned that the pic line is a possibility, and so are the 2 small incisions from the stent procedure. We hope for all good news coming out of the blood work.
Today Anne ordered a chicken sandwich for lunch, which looked as good as the burgers did last night. She loaded it with condiments and enjoyed again, and without sickness afterwards. I am amazed or should I say I give up trying to figure out this girl.
She took 3 walks around the 400 foot block today. Everyone is happy about how she's doing.
Today Dr. E. called the fever and UTI minor setbacks. He seems in no hurry to send Anne home. He has reduced her Lasix dose to one pill daily, down from 2. She has lost 47 pounds of fluid weight and he said he'd like to see her loose 10 more.
Our prayers are being answered.
Sorry I left you hanging yesterday. It was a long day with activities will into the evening keeping us busy. And thanks for returning today to keep up with Anne's progress.
Not sure I'd menioned that on Saturday Anne had a low grade fever for awhile. It went away with some Tylenol.
On Sunday she had a good quiet day, sleeping alot, and she walked one lap around the 400 foot block, late afternoon, without stopping. I don't remember much else happening on Sunday, maybe it will come to me as I write.
On Monday another low grade fever was detected and it got the doctors attention. Around 7pm we learned that Dr. Ebrahim had ordered a chest xray, and blood work.
Anne also learned that there is concern for 2 blood clots. One is near the pelvic area, and the other in the chest. It seems that these are expected, maybe routine whenever someone spends alot of time in the hospital and it not up and around much. These are treated with blood thinners, but doctors do not spend alot of time tracking or studying them to see if they are dissolving. It's seems like they are common, treated casually. They can be dangerous though if they make it to the lungs, especially if they are large. Remember David Bloom from NBC news. Anyway, Anne is being treated for these.
Last night Anne and I enjoyed hamburgers from Room Service. Anne ordered us each one, with cheese, and loaded with all the condiments you can imagine. I cut Anne's burger in half and I got upset when she went for the second half. She was enjoying it so much I was certain she'd soon be in severe pain, calling for meds, and that I'd be here late all worried about her. Well, the burgers were fantastic, and big, she was still raving about it today, and, she never became sick after eating the whole thing. I'd have bet money otherwise.
At around 8pm we headed down to have the chest xray done. I stayed with her because I don't like her having to go down to the basement alone where the xray dept is. It's kinda the older part of the hospital. They kind of drop you in a parking area to wait, then they call your number and you go in, then they park you again until the transport person comes to take you back to your room. Anyway, it went quickly. We were back in the room by 9pm. Our concern was that the xray might reveal something serious causing the low grade temps, such as pneumonia or something like that.
Today we learned the good news that there is no pneumonia to be found. A urine test did conclude that Anne has another UTI. Perhaps caused by the catheter being used for so many days? Anyway, all good news. The UTI can easily be treated.
Blood tests results from last nights draw were not available today. So, we hope those tests do not show any other infections beyond the UTI. Dr. E. warned that the pic line is a possibility, and so are the 2 small incisions from the stent procedure. We hope for all good news coming out of the blood work.
Today Anne ordered a chicken sandwich for lunch, which looked as good as the burgers did last night. She loaded it with condiments and enjoyed again, and without sickness afterwards. I am amazed or should I say I give up trying to figure out this girl.
She took 3 walks around the 400 foot block today. Everyone is happy about how she's doing.
Today Dr. E. called the fever and UTI minor setbacks. He seems in no hurry to send Anne home. He has reduced her Lasix dose to one pill daily, down from 2. She has lost 47 pounds of fluid weight and he said he'd like to see her loose 10 more.
Our prayers are being answered.
Sorry I left you hanging yesterday. It was a long day with activities will into the evening keeping us busy. And thanks for returning today to keep up with Anne's progress.
Sunday, January 29, 2012
No Visitors Sunday Please
Hi Friends,
Anne has had a good weekend. Her catheter was removed yesterday, and after 2 tries she remembered how to pee at the toilet. Now she's running back and forth to the bathroom frequently as the body fluid continues to vacate her body. Anne has lost around 43 of the 54 extra pounds so far, and she's getting around much better. There was one pound gained yesterday, and 6.8 lbs lost today. She is now only 11 lbs over her original weight dating back to November.
The on-call doctor today, Dr. Hedlund (the one who kindly admitted us to Gibson on Christmas eve based on our phone call) recommended strictly rest for Anne today, Sunday. Same as what Dr. Ebrahim recommended on Friday for Anne for this weekend.
Yesterday Anne got up and walked around the block here, around the Gibson Pavillion block that is, it's about 400 feet. She continues to have some pain after eating, and after excercise, but it seems manageable using pain meds she has available to her.
There has been concern at times for an occasional low BP.
Anne would like to thank all of you for your cards and expressions of love and concern. You're prayers help so much, just knowing you are there.
If Anne can continue to get stronger, and to loose the excess water weight, then she may come home before long. We'll have to see. She is having some really good times now, looking good and feeling alert, that mixed with many periods of belly pain, much to be expected.
We hope you are all having a good weekend, enjoying the bright sun and warm temps.
Anne has had a good weekend. Her catheter was removed yesterday, and after 2 tries she remembered how to pee at the toilet. Now she's running back and forth to the bathroom frequently as the body fluid continues to vacate her body. Anne has lost around 43 of the 54 extra pounds so far, and she's getting around much better. There was one pound gained yesterday, and 6.8 lbs lost today. She is now only 11 lbs over her original weight dating back to November.
The on-call doctor today, Dr. Hedlund (the one who kindly admitted us to Gibson on Christmas eve based on our phone call) recommended strictly rest for Anne today, Sunday. Same as what Dr. Ebrahim recommended on Friday for Anne for this weekend.
Yesterday Anne got up and walked around the block here, around the Gibson Pavillion block that is, it's about 400 feet. She continues to have some pain after eating, and after excercise, but it seems manageable using pain meds she has available to her.
There has been concern at times for an occasional low BP.
Anne would like to thank all of you for your cards and expressions of love and concern. You're prayers help so much, just knowing you are there.
If Anne can continue to get stronger, and to loose the excess water weight, then she may come home before long. We'll have to see. She is having some really good times now, looking good and feeling alert, that mixed with many periods of belly pain, much to be expected.
We hope you are all having a good weekend, enjoying the bright sun and warm temps.
Friday, January 27, 2012
Feeling and doing better, Fri, 3:44pm
Anne has done very well since surviving yesterdays 'stent event'. It was certainly draining (no pun intended).
There's a noticable difference in how she feels. Alot of it could be relief, as she was definately 'freaking out' in the morning as she waited for the procedure to begin. She was told she'd be 2nd of the day, happening in late morning. It ended up starting at 2pm and ending at 5pm, so it was a long and tedious wait. She's more 'herself' ever since sitting up last night once the sedation started to wear off.
Today Dr. Ebrahim told us he was pleased with the reports he'd gotten back from Interventional Radiology. He said they radiologist was challenged, but he emphasized how well the job was done, just as good as it could have.
For this weekend he's prescribing nothing but rest and relaxation for Anne. He's now changed her diuretic med from IV Lasix to pill form.
Sounds kinda boring, but for me it doesn't matter. It doesn't take much to entertain me while I'm here. I'm fascinated just watching the urine drip into the catheter bag, as long as she's smiling, and she is smiling more and more.
I told Dr. Ebrahim how I was just amazed how on Wednesday he had called for the CT Scan and uncovered the problem with the IVC vein, and on Thursday the problem was successfully repaired and fluid was running from Anne's body. Some of the things they do here just blow my mind.
I'm so happy for Anne that she has that procedure behind her. We were given all the necessary information ahead of time as far as what needed to be done, and what to expect, and in a very relaxed fashion. With that we were given a chance to ask all of our questions, but Anne was groggy tired and was never really sure what it was all about. It was all very frightening to me too, just to think that Anne was facing yet another procedure.
Dr. Ebrahim had said to us yesterday morning that the stent would be our 'last option' in terms of helping Anne offload the excessive body fluid that was keeping her down. He didn't know of anything further that could be done. Thinking about that, that was a very scary thing to hear. Anne said to me this morning that if the procedure had failed, that her entire thought process would have shifted to things like palliative care and hospice. Can you imagine what she went thru yesterday? She was so courageous.
This morning when I got in she was relaxing in the recliner. She had a heat pad on her right front shoulder where the upper incision happened yesterday. There was some pain there. She had already had breakfast. Then she asked for help with a shower, then she combed her hair out. She ordered and ate lunch, and now she's resting in bed. It's around 4pm.
There shouldn't be too much news to blog about over this weekend. All in all we're just relieved, happy, and pleased to think that Anne will be mobilizing soon, wanting to walk about and get stronger.
We again thank you all for your continued support, prayers and good wishes. Thank you for being there. Know that Anne is feeling better, and relieved, not ready to give up.
There's a noticable difference in how she feels. Alot of it could be relief, as she was definately 'freaking out' in the morning as she waited for the procedure to begin. She was told she'd be 2nd of the day, happening in late morning. It ended up starting at 2pm and ending at 5pm, so it was a long and tedious wait. She's more 'herself' ever since sitting up last night once the sedation started to wear off.
Today Dr. Ebrahim told us he was pleased with the reports he'd gotten back from Interventional Radiology. He said they radiologist was challenged, but he emphasized how well the job was done, just as good as it could have.
For this weekend he's prescribing nothing but rest and relaxation for Anne. He's now changed her diuretic med from IV Lasix to pill form.
Sounds kinda boring, but for me it doesn't matter. It doesn't take much to entertain me while I'm here. I'm fascinated just watching the urine drip into the catheter bag, as long as she's smiling, and she is smiling more and more.
I told Dr. Ebrahim how I was just amazed how on Wednesday he had called for the CT Scan and uncovered the problem with the IVC vein, and on Thursday the problem was successfully repaired and fluid was running from Anne's body. Some of the things they do here just blow my mind.
I'm so happy for Anne that she has that procedure behind her. We were given all the necessary information ahead of time as far as what needed to be done, and what to expect, and in a very relaxed fashion. With that we were given a chance to ask all of our questions, but Anne was groggy tired and was never really sure what it was all about. It was all very frightening to me too, just to think that Anne was facing yet another procedure.
Dr. Ebrahim had said to us yesterday morning that the stent would be our 'last option' in terms of helping Anne offload the excessive body fluid that was keeping her down. He didn't know of anything further that could be done. Thinking about that, that was a very scary thing to hear. Anne said to me this morning that if the procedure had failed, that her entire thought process would have shifted to things like palliative care and hospice. Can you imagine what she went thru yesterday? She was so courageous.
This morning when I got in she was relaxing in the recliner. She had a heat pad on her right front shoulder where the upper incision happened yesterday. There was some pain there. She had already had breakfast. Then she asked for help with a shower, then she combed her hair out. She ordered and ate lunch, and now she's resting in bed. It's around 4pm.
There shouldn't be too much news to blog about over this weekend. All in all we're just relieved, happy, and pleased to think that Anne will be mobilizing soon, wanting to walk about and get stronger.
We again thank you all for your continued support, prayers and good wishes. Thank you for being there. Know that Anne is feeling better, and relieved, not ready to give up.
Thursday, January 26, 2012
Stent procedure a success, Thursday 7pm
Hi all friends and readers,
Today was a long, tumultuous, stressful day. Important decisions were made by Anne, and this afternoon she went thru yet another procedure. She came thru it as you'd expect, like a trooper, with flying colors.
Anne was finally taken for the procedure at 2:00pm. She was taken to the procedure room down in interventional radiology. She came out of it around 5pm. At the moment, 7:15pm, she's still very drowsy. The procedure of installing 2 stents near the liver and heart, to create a channel for the Inferior Vena Cava was a success.
She's just now taking her first drink of the day, first water, then she asked for her mango-pineapple smoothy which was on standby in the freezer. We're just listening to some TV and waiting to see if she becomes interested in the turkey dinner that's been delivered for her. The pumpkin pie looks good, and she has a serving of humus too.
The doctors had said they would go in thru the groin to install the stent, but they went in from a spot near the clavicle as well, and they installed not one but 2 stents. The doctor came to see us after he was done and reported that it came out just as good as it possibly could have. He was pleased. He said on entry, they discovered that the IVC was completely ecluded (sp?), or closed. Now it is freed up and fully operational.
Since Anne has been back in the room here we've been pretty amazed in watching the generous flow of urine thru the catheter. The IV lasix will not be given tonight. I'm sure Dr. Ebrahim is hoping that maybe Anne's body will be able to process and expell the fluid on it's own. In terms of the bodily fluid problem, the future is bright.
Yesterday as Anne pondered the stent procedure she was saying 'why not'. Today, this morning fairly early, the doctors showed up to talk with and console Anne, and to get her decision. She was much more unsure and anxious about it today than yesterday. I can't blame her. She was especially brave to make the 'go' decision, and I'm very proud of her considering what she's gone thru today.
She asked for pain meds around 7:15pm, saying the pain was not the usual belly pain, rather that it felt as though it was a different pain from the procedure. The nurse brought her some Dilloted and she is comfortable with that now.
It's time for me to shove off for the night. I'm grateful for all of your prayers and concerns.
Today was a long, tumultuous, stressful day. Important decisions were made by Anne, and this afternoon she went thru yet another procedure. She came thru it as you'd expect, like a trooper, with flying colors.
Anne was finally taken for the procedure at 2:00pm. She was taken to the procedure room down in interventional radiology. She came out of it around 5pm. At the moment, 7:15pm, she's still very drowsy. The procedure of installing 2 stents near the liver and heart, to create a channel for the Inferior Vena Cava was a success.
She's just now taking her first drink of the day, first water, then she asked for her mango-pineapple smoothy which was on standby in the freezer. We're just listening to some TV and waiting to see if she becomes interested in the turkey dinner that's been delivered for her. The pumpkin pie looks good, and she has a serving of humus too.
The doctors had said they would go in thru the groin to install the stent, but they went in from a spot near the clavicle as well, and they installed not one but 2 stents. The doctor came to see us after he was done and reported that it came out just as good as it possibly could have. He was pleased. He said on entry, they discovered that the IVC was completely ecluded (sp?), or closed. Now it is freed up and fully operational.
Since Anne has been back in the room here we've been pretty amazed in watching the generous flow of urine thru the catheter. The IV lasix will not be given tonight. I'm sure Dr. Ebrahim is hoping that maybe Anne's body will be able to process and expell the fluid on it's own. In terms of the bodily fluid problem, the future is bright.
Yesterday as Anne pondered the stent procedure she was saying 'why not'. Today, this morning fairly early, the doctors showed up to talk with and console Anne, and to get her decision. She was much more unsure and anxious about it today than yesterday. I can't blame her. She was especially brave to make the 'go' decision, and I'm very proud of her considering what she's gone thru today.
She asked for pain meds around 7:15pm, saying the pain was not the usual belly pain, rather that it felt as though it was a different pain from the procedure. The nurse brought her some Dilloted and she is comfortable with that now.
It's time for me to shove off for the night. I'm grateful for all of your prayers and concerns.
Wednesday, January 25, 2012
Weds, 7pm, CT scan results
I arrived early today, early enough to be here with Anne when Dr. Ebrahim came. Laurie was here too.
Anne said she had a good night sleeping, and she was continuing to have a good morning. Very sociable and alert.
Dr. Ebrahim came with the news from the CT Scan. He told us Anne's cancer spots, one on her liver, and one near her windpipe, were maybe twice as big as they were last October when they were discovered.
He told us what else he learned from the CT scan. He understood why the diuretics were no longer as effective at removing the fluid to the extent that he had hoped. He said the tumor in the liver is putting pressure on the IVC (inferior vena cava). That is the largest vein we have which brings fluids to the heart from the lower half of our body. With that pressure, the fluid cannot get to the heart, therefore cannot get to the kidneys, therefore cannot leave the body.
He talked about the possibility of having a stent placed in there to open the channel. If it can be done, Anne could get down to her normal weight before she goes home. She would also be more comfortable, and more mobile on her feet once home. He was going to have a talk with the people here that do this, in interventional radiology. He would study the CT Scan with them and ask for their opinion on the possible benefits, risks, etc..
Later, Dr. Chris Anderson, an interventional radiologist, came here to visit us and he spent time talking about the stent procedure. He was very informative and helpful, and he answered all of our questions. It is a non-invasive procedure, where they go in from the groin. They can do a pre- exam and go in and look into the area before actually doing the procedure. They can make a fairly good determination of their chances for success. He says they do these every day, and as outpatient procedures. There is very little of a recovery time involved. All of this is going to be up to Anne and how she feels about having another procedure. She has had a very good last 36 hours. We'll see.
He did state that the recurring esophageal cancer is pretty agressive, and it will grow without treatment, and possibly cause other problems along the way. At this point we don't know whether Anne will opt for any further cancer treatment. I'm thinking not, but she never ceases to amaze you know. So, the cancer could grow and over come the stent in the future. No one knows.
Anne and I will sleep on it, pray about it, and make a decision tomorrow when Dr. Ebrahim comes back to see us. It's alot for her to think about. I have spent time explaining all of this to her when she has been alert. We agree that we should sleep on it and pray.
This could be done tomorrow if Anne opts for it. After that a few more days of fluid removal with diuretics, and then she'd come home as long as any extensive Physical Therapy are not needed. Anne would only go to one place for PT, and that would be the Brighton Campus of MMC. That's where she went after her brain surgery, and more recently where she went to volunteer with Dixie, her therapy dog, on Friday mornings during the summer. They know and love here there.
Please pray with us tonight. Pray that we are guided to make the right decision, and do the right thing for Anne.
Anne said she had a good night sleeping, and she was continuing to have a good morning. Very sociable and alert.
Dr. Ebrahim came with the news from the CT Scan. He told us Anne's cancer spots, one on her liver, and one near her windpipe, were maybe twice as big as they were last October when they were discovered.
He told us what else he learned from the CT scan. He understood why the diuretics were no longer as effective at removing the fluid to the extent that he had hoped. He said the tumor in the liver is putting pressure on the IVC (inferior vena cava). That is the largest vein we have which brings fluids to the heart from the lower half of our body. With that pressure, the fluid cannot get to the heart, therefore cannot get to the kidneys, therefore cannot leave the body.
He talked about the possibility of having a stent placed in there to open the channel. If it can be done, Anne could get down to her normal weight before she goes home. She would also be more comfortable, and more mobile on her feet once home. He was going to have a talk with the people here that do this, in interventional radiology. He would study the CT Scan with them and ask for their opinion on the possible benefits, risks, etc..
Later, Dr. Chris Anderson, an interventional radiologist, came here to visit us and he spent time talking about the stent procedure. He was very informative and helpful, and he answered all of our questions. It is a non-invasive procedure, where they go in from the groin. They can do a pre- exam and go in and look into the area before actually doing the procedure. They can make a fairly good determination of their chances for success. He says they do these every day, and as outpatient procedures. There is very little of a recovery time involved. All of this is going to be up to Anne and how she feels about having another procedure. She has had a very good last 36 hours. We'll see.
He did state that the recurring esophageal cancer is pretty agressive, and it will grow without treatment, and possibly cause other problems along the way. At this point we don't know whether Anne will opt for any further cancer treatment. I'm thinking not, but she never ceases to amaze you know. So, the cancer could grow and over come the stent in the future. No one knows.
Anne and I will sleep on it, pray about it, and make a decision tomorrow when Dr. Ebrahim comes back to see us. It's alot for her to think about. I have spent time explaining all of this to her when she has been alert. We agree that we should sleep on it and pray.
This could be done tomorrow if Anne opts for it. After that a few more days of fluid removal with diuretics, and then she'd come home as long as any extensive Physical Therapy are not needed. Anne would only go to one place for PT, and that would be the Brighton Campus of MMC. That's where she went after her brain surgery, and more recently where she went to volunteer with Dixie, her therapy dog, on Friday mornings during the summer. They know and love here there.
Please pray with us tonight. Pray that we are guided to make the right decision, and do the right thing for Anne.
Tuesday, January 24, 2012
Tuesday, 7pm
What do ya know, a down and up day.
When I got in, early today, Anne was miserable after being treated for constipation the last half of the night, including a suppository, very painful according to Anne, which she said brought her to tears. That battle lasted well into this morning before it ended, and it included another painful suppository.
I missed Dr. Ebrahim on his rounds to Anne's room before 9, but then I was able to make eye contact with him in the hallway and he said, "I'll come see ya." So, I sat tight till he came by. I hadn't seen him since around last Thursday, so he knew I'd wanted to see him, and Anne told him I was trying to get in early for that reason.
He came back around 10:30. He stated that Anne would be here for at least another week because of the fluid weight. I've been keeping a chart of Anne's weight loss and we looked at that, and it showed she hadn't lost any weight for the past 2 days. He knew that, and he stated that since Anne, and her kidneys, are tolerating the Lasix just fine, that he planned to increase the dose starting tonight.
Not only that, but since it's been a while since Anne's last CatScan, he ordered one for this morning, and Anne completed that between 11 and noon. Before that she had to drink a quart of 'red stuff' in prep for the CT scan. That was WORK to get that down. She had a bunch of pain so that when the ride came for the CT Scan they put in for a 15 minute delay. With all of that, it was a lousy morning, and she went down stairs not feeling very well for the scan. Afterwards she asked for pain meds, and they came thru with IV Dilotted. She had a good nap after that, and I ran to do a couple errands.
I brought in a basic bare bones (2 inch thick) sandwich from Full Belly Deli and we shared that for lunch. Yum. She didn't even come close to eating half. Moderation is the key. Lean cold corned beef on marble rye with yellow mustard. She tolerated it nicely.
This afternoon she came to life and had a great afternoon. She walked some, even out of the room. We took several wheel chair rides which involves a small amount of getting up and about. She had a good time seeing everyone around the hallways again.
Then she had a good PT session even tho she didn't want to. Corina did a good 'sell job' on her. Good thing. Gotta move.
It's after 7pm now and Anne's still comfortable, watching TV and dozing after having some of tonights special, roast pork loin, gravy, mashed and green peas. I was afraid she was going to really enjoy it (if you know what I mean), but she ate in moderation and it paid off. No belly pain tonight, knock on wood. ! ! !
It's wonderful that she's suddenly wanting to move out of the bed and recliner more and more, to get up and move. The narcotics coupled with a lack of movment is a recipe for disaster in terms of constipation issues. She knows that. She seems to just be feeling better today, and stronger too. A pleasant surprise after a very tough morning.
I've gotta tell you, we both know we're going to learn something from the CT Scan, and it's worrysome. Please pray for good news coming from that test tomorrow. Last time a shadow was seen, last Fall, and we all know what that meant. So keep Anne in your prayers. Thank you everybody.
When I got in, early today, Anne was miserable after being treated for constipation the last half of the night, including a suppository, very painful according to Anne, which she said brought her to tears. That battle lasted well into this morning before it ended, and it included another painful suppository.
I missed Dr. Ebrahim on his rounds to Anne's room before 9, but then I was able to make eye contact with him in the hallway and he said, "I'll come see ya." So, I sat tight till he came by. I hadn't seen him since around last Thursday, so he knew I'd wanted to see him, and Anne told him I was trying to get in early for that reason.
He came back around 10:30. He stated that Anne would be here for at least another week because of the fluid weight. I've been keeping a chart of Anne's weight loss and we looked at that, and it showed she hadn't lost any weight for the past 2 days. He knew that, and he stated that since Anne, and her kidneys, are tolerating the Lasix just fine, that he planned to increase the dose starting tonight.
Not only that, but since it's been a while since Anne's last CatScan, he ordered one for this morning, and Anne completed that between 11 and noon. Before that she had to drink a quart of 'red stuff' in prep for the CT scan. That was WORK to get that down. She had a bunch of pain so that when the ride came for the CT Scan they put in for a 15 minute delay. With all of that, it was a lousy morning, and she went down stairs not feeling very well for the scan. Afterwards she asked for pain meds, and they came thru with IV Dilotted. She had a good nap after that, and I ran to do a couple errands.
I brought in a basic bare bones (2 inch thick) sandwich from Full Belly Deli and we shared that for lunch. Yum. She didn't even come close to eating half. Moderation is the key. Lean cold corned beef on marble rye with yellow mustard. She tolerated it nicely.
This afternoon she came to life and had a great afternoon. She walked some, even out of the room. We took several wheel chair rides which involves a small amount of getting up and about. She had a good time seeing everyone around the hallways again.
Then she had a good PT session even tho she didn't want to. Corina did a good 'sell job' on her. Good thing. Gotta move.
It's after 7pm now and Anne's still comfortable, watching TV and dozing after having some of tonights special, roast pork loin, gravy, mashed and green peas. I was afraid she was going to really enjoy it (if you know what I mean), but she ate in moderation and it paid off. No belly pain tonight, knock on wood. ! ! !
It's wonderful that she's suddenly wanting to move out of the bed and recliner more and more, to get up and move. The narcotics coupled with a lack of movment is a recipe for disaster in terms of constipation issues. She knows that. She seems to just be feeling better today, and stronger too. A pleasant surprise after a very tough morning.
I've gotta tell you, we both know we're going to learn something from the CT Scan, and it's worrysome. Please pray for good news coming from that test tomorrow. Last time a shadow was seen, last Fall, and we all know what that meant. So keep Anne in your prayers. Thank you everybody.
Monday, January 23, 2012
The Long Weekend, 7pm Monday
Hi all friends and readers,
At the moment Anne is relaxed and watching afternoon TV. She had a few lousy days this weekend, Fri, Sat, Sun, just not feeling well. Not hardly any smiles at all. It was a very long weekend and I noticed that I didn't update the blog all during that time. Sorry for that, but well, there wasn't much good to say.
Dr. Duggan was on call here this weekend, and when they couldn't help Anne get rid of the nausea on Saturday he introduced a new drug, at least new for Anne, Decadron (dexamethasone). I'm wondering if this had anything to do with the lousy weekend? Just making a note of it here.
Anne continued to lose fluid weight, almost every day, to the tune of 27 pounds total so far. There was a day she lost nothing, and another day she gained a pound. Last Tuesday we determined that she'd been carrying 54 pounds of fluid weight. With that, I guess she is halfway home.
The IV lasix is still being used, and actually is being increased this evening. It is given morning and night. The nurse was wrong last Friday when she said she thought they'd change back over to Lasix pills and be sending Anne home in the next couple days. Anne says that Dr. Ebrahim said today that she could be here another 10 days. I hope to catch the Dr. visit tomorrow, but it's tough to be here daily, well into the evenings with Anne, and then get in here early enough to catch the Dr. when he's in here early. Besides, there's no schedule, so I need to be lucky too. We never know when the Dr. might pop in.
Anne went thru a sad period this morning, what with all the belly pain and nausea she experienced all weekend long. It got to her and she became pretty discouraged. She was having some tough thoughts and I was so glad it came out while I was here with her. We cried. She's pretty tired of all the drugs and care needed, and when the belly pain sticks around too long well she gets worried and scared.
This afternoon though, when she became eligible for 2 more oxycodone pain pills around 2pm, her smile came back, her eyes opened wide again, and her face relaxed. I hadn't seen that relaxed look since last week. It was a relief. So we hopped into the wheelchair for the second time since yesterday, and we took a spin around the place. She saw tons of people around the hallway who she was glad to see, and she socialized as we walked. So many people have such nice things to say about Anne, they just love her around here. They are like me in that when Anne is down, they are down, and when Anne is up, they are up. There's alot of love between Anne and her caregivers.
I'm asking you all to pray for Anne's well being, that she has more good times than bad going forward, that she makes good choices at meal time and can tolerate those meals, and that we can find the perfect mix of meds to make Anne as comfortable, alert, and pain free as we can, more often than not.
At the moment Anne is relaxed and watching afternoon TV. She had a few lousy days this weekend, Fri, Sat, Sun, just not feeling well. Not hardly any smiles at all. It was a very long weekend and I noticed that I didn't update the blog all during that time. Sorry for that, but well, there wasn't much good to say.
Dr. Duggan was on call here this weekend, and when they couldn't help Anne get rid of the nausea on Saturday he introduced a new drug, at least new for Anne, Decadron (dexamethasone). I'm wondering if this had anything to do with the lousy weekend? Just making a note of it here.
Anne continued to lose fluid weight, almost every day, to the tune of 27 pounds total so far. There was a day she lost nothing, and another day she gained a pound. Last Tuesday we determined that she'd been carrying 54 pounds of fluid weight. With that, I guess she is halfway home.
The IV lasix is still being used, and actually is being increased this evening. It is given morning and night. The nurse was wrong last Friday when she said she thought they'd change back over to Lasix pills and be sending Anne home in the next couple days. Anne says that Dr. Ebrahim said today that she could be here another 10 days. I hope to catch the Dr. visit tomorrow, but it's tough to be here daily, well into the evenings with Anne, and then get in here early enough to catch the Dr. when he's in here early. Besides, there's no schedule, so I need to be lucky too. We never know when the Dr. might pop in.
Anne went thru a sad period this morning, what with all the belly pain and nausea she experienced all weekend long. It got to her and she became pretty discouraged. She was having some tough thoughts and I was so glad it came out while I was here with her. We cried. She's pretty tired of all the drugs and care needed, and when the belly pain sticks around too long well she gets worried and scared.
This afternoon though, when she became eligible for 2 more oxycodone pain pills around 2pm, her smile came back, her eyes opened wide again, and her face relaxed. I hadn't seen that relaxed look since last week. It was a relief. So we hopped into the wheelchair for the second time since yesterday, and we took a spin around the place. She saw tons of people around the hallway who she was glad to see, and she socialized as we walked. So many people have such nice things to say about Anne, they just love her around here. They are like me in that when Anne is down, they are down, and when Anne is up, they are up. There's alot of love between Anne and her caregivers.
I'm asking you all to pray for Anne's well being, that she has more good times than bad going forward, that she makes good choices at meal time and can tolerate those meals, and that we can find the perfect mix of meds to make Anne as comfortable, alert, and pain free as we can, more often than not.
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