Saturday, September 30, 2006
Yesterday was Penny’s 49th birthday.
Today I can start telling her she is almost 50.
Thanks to everyone for the birthday wishes, and your messages.
I just remembered today that Penny had been using a yahoo account for her email and logged in to peek. There were almost 300 messages in her inbox since she last logged in there. I have only been checking her Telus account for her. And I said I was reading all her mail to her…apparently not.
Penny is looking a little better since Wednesday. Her pallor is noticeably improved. She is still having a lot of trouble with the nausea, and it is worse today because they changed her medication for it but she won’t let them put another needle in just yet. They actually want to put 3 more in, to make a total of 5, plus the IV in her hand for a total of six. One for each medication she is currently taking. Sounds like a bit much, but I suppose it beats getting a needle every time you have to take meds. Had a bad night with the pain again, and is struggling a little today. They switched her back to morphine last night, and every time they switch the meds it takes a while to adjust the dose just right to keep her comfy. She is holding out to see the Doctor before she gets poked again.
Noon
Doctor was just in. Going to try and give more of her meds through IV for now, but will eventually have to put the other needles in. A temporary reprieve.
Took her for a spin around the fifth floor in a wheelchair Thursday night, and got her into the shower for a shampoo as well. And after doing all that nice stuff for her she kicked me out of her room, sent me home for a nap. Friday night she was up for a visit with Peter and Tanya, and Mom and Dad are here for hours every day to visit. There are maybe two hours out of 24 in intervals that Penny is up for anything. She sleeps, or tries to, for the other 22. She mentioned this morning how nice it would be to have just a little bit more energy.
Penny called me at home last night to say the palliative nurse had been for a visit. She said we should know by Monday night or Tuesday about being admitted to hospice. I will try to read her birthday greetings to her when she is up for it.
Michael
Saturday, September 30, 2006
Thursday, September 28, 2006
Yesterday was a good day.
Thursday, September 28, 2006
Tuesday night was uneventful, and peaceful, and we caught up on some rest. Mom and Dad came again in the morning, Wednesday, and stayed until Penny got back to the room around 5. It took about 4 hours to get it all done
The procedure was a success, but it was a long difficult afternoon for her.
When Pen woke up around 11PM tonight for her four hour med nurses visit, I asked her if she wanted to add anything to the blog today. She said no, just to thank everyone again, and that tomorrow when she felt better she was going to type herself and tell everybody what the experience felt like.
They had to guide a needle through her abdomen, liver, bile ducts and into the intestine, and then wheel her down to another room where they did the ERCP again, found the wire inside and used it to guide the stent into place to open up the bile ducts. They don’t put you out for this thing. You need to be semi conscious. They used a different term like comatose consciousness or something, but the point is you are aware for this little adventure. They don’t want you to hurt too bad, but they need you to be able to move around a little during this to help them guide their instruments around in there. Penny’s head was dripping with sweat when she got out of there. I got in to have a peek at the picture on the monitor with Penny just when they finished up. The image of the stint in place in the duct, along with surrounding organs, bones, etc. was crystal clear. That is amazing stuff they do in there. Penny was awake and talking as soon as it was done, and the first thing she said was, ‘it was awful’.
She seems to have tolerated it all very well though, and recovered nicely so far.
She slept for a bit when she got back to the room. Then she got up and dressed in her own nightie and relaxed in the reclining chair for a visit with Pete and Julie, and enjoyed the sunset view at the same time.
It is almost 2 in the morning now, and Pen has only had 1 BT med all night, and that was hours ago, so it looks like another peaceful night. Huge thank you very much to all the staff here again for your efforts and kindness yesterday. Everyday.
Yesterday was a good day.
Michael
Tuesday night was uneventful, and peaceful, and we caught up on some rest. Mom and Dad came again in the morning, Wednesday, and stayed until Penny got back to the room around 5. It took about 4 hours to get it all done
The procedure was a success, but it was a long difficult afternoon for her.
When Pen woke up around 11PM tonight for her four hour med nurses visit, I asked her if she wanted to add anything to the blog today. She said no, just to thank everyone again, and that tomorrow when she felt better she was going to type herself and tell everybody what the experience felt like.
They had to guide a needle through her abdomen, liver, bile ducts and into the intestine, and then wheel her down to another room where they did the ERCP again, found the wire inside and used it to guide the stent into place to open up the bile ducts. They don’t put you out for this thing. You need to be semi conscious. They used a different term like comatose consciousness or something, but the point is you are aware for this little adventure. They don’t want you to hurt too bad, but they need you to be able to move around a little during this to help them guide their instruments around in there. Penny’s head was dripping with sweat when she got out of there. I got in to have a peek at the picture on the monitor with Penny just when they finished up. The image of the stint in place in the duct, along with surrounding organs, bones, etc. was crystal clear. That is amazing stuff they do in there. Penny was awake and talking as soon as it was done, and the first thing she said was, ‘it was awful’.
She seems to have tolerated it all very well though, and recovered nicely so far.
She slept for a bit when she got back to the room. Then she got up and dressed in her own nightie and relaxed in the reclining chair for a visit with Pete and Julie, and enjoyed the sunset view at the same time.
It is almost 2 in the morning now, and Pen has only had 1 BT med all night, and that was hours ago, so it looks like another peaceful night. Huge thank you very much to all the staff here again for your efforts and kindness yesterday. Everyday.
Yesterday was a good day.
Michael
Tuesday, September 26, 2006
Almost Wednesday,,,,,,,again.
Sunday, September 24, 2006
It is noon, Sunday, and Penny is sleeping comfortably.
She had a peaceful night again, but is very tired today. I mentioned there were no visitors that I knew of that were coming today except Tanya, and she said ‘that’s good, I just want to sleep.’ She has no energy at all. The doctor mentioned that this morning too. Said they are pretty good at pain management, but there is not much they can do about the energy level. Pam came and spent the afternoon with Pen.
11:00 PM Sunday.
It was not a very good night. When I came back to the hospital a little after 8 to spend the night again I found Penny sitting up in bed, crying and in pain, her IV line was tangled in one side of the bed and she was nauseous and throwing up. They were 3 people short staffed yesterday and got behind on her meds a little bit. Got her untangled and the nurse came in shortly afterward with the extra pain meds. Ten minutes later she was comfy again, hair brushed and all tucked in, drifting off to sleep.
10:00 AM Monday
We didn’t get a lot of sleep last night. At 2 this morning they had to change one of the injection sites. Only took ten minutes but Penny finds it painful. She has been complaining for a long time, months, about how much her skin hurts all over, and when they tear that special tape off that holds the butterfly needle in she struggles with it. Well, they don’t tear it off, but rather peel it back slowly. Takes at least 5 minutes to get it off and she grimaces for every second of it. She has 3 or 4 of those needles in her all the time in different places for the different drugs they inject. Plus the IV in her hand. Poor girl must feel a little like a pincushion. And she was worried about the procedure that is being done today so that didn’t help either.
I read a few emails to Penny. Mom read some letters to her this morning too. Helped take her mind off things a little. She seldom opens her eyes but she does smile often when read to She has been comfortable and resting/sleeping since about 4 AM. I am glad they are running a little late this morning. Give her a chance to rest up a bit for it.
So, almost time to go downstairs for the ERCP.
10:00 PM Monday
They took Penny down for the ERCP about 1 and she was back in her room by 3. It didn’t work out today. Constricted space caused by one or more of the tumors, and partly because Penny has some tremors from the meds meant that they will have to try a different method. They have that booked for Wednesday.
Mom and Dad spent most of the day here, and Tanya was here this evening till I got back. Penny had a sleepy afternoon.
8:00 AM Tuesday
Had a pretty good night. Little confusion over wrong meds at 3 in the morning and they had to change the IV to her right hand but pretty comfortable otherwise. They woke us up at midnight saying our daughter was just on the phone complaining that her mom had a bad rash on her ass and that she wanted it fixed right now. Wrong room, but they almost had us convinced it was Tanya even though Penny has no rash problem anywhere. We did have a chuckle about that one.
Penny’s blood pressure was very low yesterday and her energy levels have dropped to pretty much zero. Her skin hurts and she finds even the loose hospital gowns constraining and irritating, so she drapes it instead of wearing it. Her oral fluid intake consists of a piece of ice no bigger than the size of a pea every few hours or so. They also started her on oxygen yesterday. They have the worst of the pain under control, but with the extra BT meds last night, her spasms have returned. They are almost as bad this morning as I have ever seen them. Her breathing pattern is changing when she is sleeping. And the jaundice is remarkably noticeable.
8:00 PM Tuesday
Almost Wednesday again.
It was a week ago I started doing this for Pen. The night she was admitted to hospital.
Feels like a month, at least. Lots of ups and downs during the day, and night. For everyone.
Mom and Dad spent the afternoon with her. Paula and Dennis popped in for a quick visit this evening.
Hope she has a good night. They are trying again tomorrow to insert the stent, and it is a more invasive procedure than the first one. She gave up wearing the gown altogether this afternoon. Having large fluctuations in her blood pressure, and the tests they do for oxygen are showing a steady decline.
Penny woke up for a moment, so I opened the blinds on the window beside her bed to give her a view of the sunset. Her room is on the 5th floor facing west, and it was especially pretty tonight. I asked her if she would like to have any input into the blog today.
She did. She said “ to say thank you to everyone for keeping in touch and for caring.” And then she went back to sleep.
Michael
It is noon, Sunday, and Penny is sleeping comfortably.
She had a peaceful night again, but is very tired today. I mentioned there were no visitors that I knew of that were coming today except Tanya, and she said ‘that’s good, I just want to sleep.’ She has no energy at all. The doctor mentioned that this morning too. Said they are pretty good at pain management, but there is not much they can do about the energy level. Pam came and spent the afternoon with Pen.
11:00 PM Sunday.
It was not a very good night. When I came back to the hospital a little after 8 to spend the night again I found Penny sitting up in bed, crying and in pain, her IV line was tangled in one side of the bed and she was nauseous and throwing up. They were 3 people short staffed yesterday and got behind on her meds a little bit. Got her untangled and the nurse came in shortly afterward with the extra pain meds. Ten minutes later she was comfy again, hair brushed and all tucked in, drifting off to sleep.
10:00 AM Monday
We didn’t get a lot of sleep last night. At 2 this morning they had to change one of the injection sites. Only took ten minutes but Penny finds it painful. She has been complaining for a long time, months, about how much her skin hurts all over, and when they tear that special tape off that holds the butterfly needle in she struggles with it. Well, they don’t tear it off, but rather peel it back slowly. Takes at least 5 minutes to get it off and she grimaces for every second of it. She has 3 or 4 of those needles in her all the time in different places for the different drugs they inject. Plus the IV in her hand. Poor girl must feel a little like a pincushion. And she was worried about the procedure that is being done today so that didn’t help either.
I read a few emails to Penny. Mom read some letters to her this morning too. Helped take her mind off things a little. She seldom opens her eyes but she does smile often when read to She has been comfortable and resting/sleeping since about 4 AM. I am glad they are running a little late this morning. Give her a chance to rest up a bit for it.
So, almost time to go downstairs for the ERCP.
10:00 PM Monday
They took Penny down for the ERCP about 1 and she was back in her room by 3. It didn’t work out today. Constricted space caused by one or more of the tumors, and partly because Penny has some tremors from the meds meant that they will have to try a different method. They have that booked for Wednesday.
Mom and Dad spent most of the day here, and Tanya was here this evening till I got back. Penny had a sleepy afternoon.
8:00 AM Tuesday
Had a pretty good night. Little confusion over wrong meds at 3 in the morning and they had to change the IV to her right hand but pretty comfortable otherwise. They woke us up at midnight saying our daughter was just on the phone complaining that her mom had a bad rash on her ass and that she wanted it fixed right now. Wrong room, but they almost had us convinced it was Tanya even though Penny has no rash problem anywhere. We did have a chuckle about that one.
Penny’s blood pressure was very low yesterday and her energy levels have dropped to pretty much zero. Her skin hurts and she finds even the loose hospital gowns constraining and irritating, so she drapes it instead of wearing it. Her oral fluid intake consists of a piece of ice no bigger than the size of a pea every few hours or so. They also started her on oxygen yesterday. They have the worst of the pain under control, but with the extra BT meds last night, her spasms have returned. They are almost as bad this morning as I have ever seen them. Her breathing pattern is changing when she is sleeping. And the jaundice is remarkably noticeable.
8:00 PM Tuesday
Almost Wednesday again.
It was a week ago I started doing this for Pen. The night she was admitted to hospital.
Feels like a month, at least. Lots of ups and downs during the day, and night. For everyone.
Mom and Dad spent the afternoon with her. Paula and Dennis popped in for a quick visit this evening.
Hope she has a good night. They are trying again tomorrow to insert the stent, and it is a more invasive procedure than the first one. She gave up wearing the gown altogether this afternoon. Having large fluctuations in her blood pressure, and the tests they do for oxygen are showing a steady decline.
Penny woke up for a moment, so I opened the blinds on the window beside her bed to give her a view of the sunset. Her room is on the 5th floor facing west, and it was especially pretty tonight. I asked her if she would like to have any input into the blog today.
She did. She said “ to say thank you to everyone for keeping in touch and for caring.” And then she went back to sleep.
Michael
Saturday, September 23, 2006
Almost a year older.
Penny has a birthday coming up next week.
She had a great visit with her sisters and Tanya last night, up and chatting for an hour.
When I arrived at the hospital this morning she smiled and said she had a good night. Slept well.
Must have, because she threw her glasses on and grabbed the laptop and did a little reading for about ten minutes. Had a bit to eat for lunch today too. The most I have seen her eat in two weeks.
Her jaundiced pallor has improved, and we had a pretty good visit this morning.
She looked better than she has for several days. She was up and happy to see Mom and Dad and Trish arrive for the afternoon. She had half a dozen more visitors this evening.
I don’t mind writing this so much today. This is all good stuff.
The nausea and pain control are still a work in progress, and cause her some distress, but it is much better. The frequency of the attacks has diminished and she doesn’t have to wait long for relief. They increased the pain meds a little last night, and seem to be doing a really good job keeping the pain under control.
The muscle spasms she had been having a thousand times a night have also almost stopped. Some of them were quite severe and it is a big relief to see them evolve into just a little twitch now and then. The spasms were a result of becoming a little toxic from all the drugs, and not getting enough fluids.
It is eight in the morning now, Saturday, and she has been sleeping peacefully since eleven last night. Very nice to see after all the tough nights that she has been having lately. The day shift nurse just came in to check BP and give meds and Penny said her pain was zero. That was so good to hear. I have not heard a zero for months. The staff here is doing an awesome job of keeping her comfortable.
The doctor was just in and confirmed the ERCP will be done on Monday. Even shifted the schedule a little bit so Penny can get this done ASAP.
At this rate, Penny might soon be typing her own blog again. I’m hoping.
11:30 AM Saturday, September 23, 2006
Tanya, Kylie and Neressa were just here for a visit. Penny had a good morning and is just settling in for her noonish siesta. She read this before I posted it and drifted off to sleep.
Michael
She had a great visit with her sisters and Tanya last night, up and chatting for an hour.
When I arrived at the hospital this morning she smiled and said she had a good night. Slept well.
Must have, because she threw her glasses on and grabbed the laptop and did a little reading for about ten minutes. Had a bit to eat for lunch today too. The most I have seen her eat in two weeks.
Her jaundiced pallor has improved, and we had a pretty good visit this morning.
She looked better than she has for several days. She was up and happy to see Mom and Dad and Trish arrive for the afternoon. She had half a dozen more visitors this evening.
I don’t mind writing this so much today. This is all good stuff.
The nausea and pain control are still a work in progress, and cause her some distress, but it is much better. The frequency of the attacks has diminished and she doesn’t have to wait long for relief. They increased the pain meds a little last night, and seem to be doing a really good job keeping the pain under control.
The muscle spasms she had been having a thousand times a night have also almost stopped. Some of them were quite severe and it is a big relief to see them evolve into just a little twitch now and then. The spasms were a result of becoming a little toxic from all the drugs, and not getting enough fluids.
It is eight in the morning now, Saturday, and she has been sleeping peacefully since eleven last night. Very nice to see after all the tough nights that she has been having lately. The day shift nurse just came in to check BP and give meds and Penny said her pain was zero. That was so good to hear. I have not heard a zero for months. The staff here is doing an awesome job of keeping her comfortable.
The doctor was just in and confirmed the ERCP will be done on Monday. Even shifted the schedule a little bit so Penny can get this done ASAP.
At this rate, Penny might soon be typing her own blog again. I’m hoping.
11:30 AM Saturday, September 23, 2006
Tanya, Kylie and Neressa were just here for a visit. Penny had a good morning and is just settling in for her noonish siesta. She read this before I posted it and drifted off to sleep.
Michael
Thursday, September 21, 2006
Almost the weekend
Thursday, September 21, 2006
Almost the weekend.
Our plans to spend a quiet week at home before Penny went to hospice have gone awry.
She is however, much more comfortable in hospital. They give a lot of her medications through the IV now instead of orally, which was getting difficult. Quite often at home she would throw up soon after taking the meds, and it was tough deciding whether to give her more or not. Getting her fluids hooked up through IV has also helped a lot. It works much faster than the setup we had at home. Even the pharmacist there comes to see her personally and checks to make sure all her medications are working well for her. She is as comfortable as can be and is surrounded by caring people. The hospital staff couldn’t be any nicer and Penny has a family member or two or three with her around the clock.
Penny received the results of yesterday’s tests this morning. There are tumors on the liver and pancreas. A specialist is going to review the tests and decide whether or not to attempt an ERCP and insert a stent.
It may make things more comfortable for her.
Thank you for all the kind messages.
I am sorry I can’t read them all to Penny anymore because she doesn’t have the energy to listen for very long. We only chat for a few minutes during a day. I do try to tell her who wrote, but I keep it short and simple and tell her they all say the same thing.
We love you Penny.
Michael
Almost the weekend.
Our plans to spend a quiet week at home before Penny went to hospice have gone awry.
She is however, much more comfortable in hospital. They give a lot of her medications through the IV now instead of orally, which was getting difficult. Quite often at home she would throw up soon after taking the meds, and it was tough deciding whether to give her more or not. Getting her fluids hooked up through IV has also helped a lot. It works much faster than the setup we had at home. Even the pharmacist there comes to see her personally and checks to make sure all her medications are working well for her. She is as comfortable as can be and is surrounded by caring people. The hospital staff couldn’t be any nicer and Penny has a family member or two or three with her around the clock.
Penny received the results of yesterday’s tests this morning. There are tumors on the liver and pancreas. A specialist is going to review the tests and decide whether or not to attempt an ERCP and insert a stent.
It may make things more comfortable for her.
Thank you for all the kind messages.
I am sorry I can’t read them all to Penny anymore because she doesn’t have the energy to listen for very long. We only chat for a few minutes during a day. I do try to tell her who wrote, but I keep it short and simple and tell her they all say the same thing.
We love you Penny.
Michael
Tuesday, September 19, 2006
Almost…..Wednesday September 19, 2006
Penny got settled in at the hospital tonight.
Another little communications problem with our health care providers but the people at the hospital have been very good about it and I am sure she will be as comfortable as can be for the rest of the night.
The paperwork will catch up, and it sounds like they know what’s going on.
Pen’s sister Paula came over to keep her company and let me get home for a few winks before I come back in the morning. And Mom and Dad came to check up on them both.
Feels like a lot of things being home alone though. Kinda hard to sleep. The last time we spent a night apart was last year when she picked up an infection during her down days on chemotherapy and got stuck in isolation at the same hospital she is at now. Had to cancel our vacation south. Got to go later though and the upside is the hospital had her on file. Made things easier tonight.
I have typed the last few posts for Pen. Since Trish last did. I read them to her before I posted them to be sure they were ok. I felt a little odd doing it at first for a number of reasons. Firstly, because Pen didn’t have the strength to do it anymore. That hurt. A lot.
The second reason is that I have never read her blog. I will, but I haven’t yet.
This one is just from me.
I read the first few, and stopped for a number of reasons. Some are personal, some were obvious, or so I thought. I live here, I don’t need to read the blog to know what is going on. People I work with, or friends who have told me where and when I am going before I knew frequently confronted me. It was in the blog.
They knew things about me I didn’t know.
I guess the moral of that story is that living here doesn’t necessarily mean you know what’s going on around here.
I do know for sure though that Penny is in good hands tonight. I hope she gets some rest.
Michael
Another little communications problem with our health care providers but the people at the hospital have been very good about it and I am sure she will be as comfortable as can be for the rest of the night.
The paperwork will catch up, and it sounds like they know what’s going on.
Pen’s sister Paula came over to keep her company and let me get home for a few winks before I come back in the morning. And Mom and Dad came to check up on them both.
Feels like a lot of things being home alone though. Kinda hard to sleep. The last time we spent a night apart was last year when she picked up an infection during her down days on chemotherapy and got stuck in isolation at the same hospital she is at now. Had to cancel our vacation south. Got to go later though and the upside is the hospital had her on file. Made things easier tonight.
I have typed the last few posts for Pen. Since Trish last did. I read them to her before I posted them to be sure they were ok. I felt a little odd doing it at first for a number of reasons. Firstly, because Pen didn’t have the strength to do it anymore. That hurt. A lot.
The second reason is that I have never read her blog. I will, but I haven’t yet.
This one is just from me.
I read the first few, and stopped for a number of reasons. Some are personal, some were obvious, or so I thought. I live here, I don’t need to read the blog to know what is going on. People I work with, or friends who have told me where and when I am going before I knew frequently confronted me. It was in the blog.
They knew things about me I didn’t know.
I guess the moral of that story is that living here doesn’t necessarily mean you know what’s going on around here.
I do know for sure though that Penny is in good hands tonight. I hope she gets some rest.
Michael
Tuesday, September 19, 2006
Last night was very difficult. Again. Getting to be a bad habit.
Sleep or doze or lie quietly all day, little bit of energy to visit in the afternoons, and then later in the evenings it becomes more difficult to control the pain. The nausea, vomiting, and diarrhea didn’t help much either. It has been almost a week since I have had a bite of anything that resembles solid food. It takes me all day to eat a Popsicle, one bite at a time.
The Doctor came to do the assessment today and said that I can’t go to hospice at the moment because they consider my condition unstable because of the liver. So. I am being admitted this evening at hospital to intensive care until they can run a ct scan and do some more blood work to find out what the problem is.
Treatment options vary depending on what they find out, and then we will know where we are going from there.
Last night was very difficult. Again. Getting to be a bad habit.
Sleep or doze or lie quietly all day, little bit of energy to visit in the afternoons, and then later in the evenings it becomes more difficult to control the pain. The nausea, vomiting, and diarrhea didn’t help much either. It has been almost a week since I have had a bite of anything that resembles solid food. It takes me all day to eat a Popsicle, one bite at a time.
The Doctor came to do the assessment today and said that I can’t go to hospice at the moment because they consider my condition unstable because of the liver. So. I am being admitted this evening at hospital to intensive care until they can run a ct scan and do some more blood work to find out what the problem is.
Treatment options vary depending on what they find out, and then we will know where we are going from there.
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