Of course, Kathie's x-ray did not show up until 9 AM (scheduled for 7:30)... oh hospital time - it's not an emergency until it's an emergency. She slept most of the night - only waking here and there. Lauren was super paranoid that she was going to pull at her catheter. Not much more fluid drained overnight. From the time she came back from the procedure until the time they came to do her x-ray, she only had about 1/5 of a liter drain.
She drank some hot chocolate for breakfast - about the time the x-ray should have been there. grrr. Anyway, the x-ray showed no change, the lung had not re-expanded and the fluid was draining so slowly it was clear that it was not going to happen anytime soon. The doctor came in and said that she could be released. It was not until after noon that they were finally ready to give her some morphine for the trip home, take out her IV and cap the catheter. Lauren pulled around the car, and around 1 Kathie finally got downstairs in the wheelchair. Kathie was clearly in some pain and seemed fearful of anyone moving her into the car.
Two valets saw that we were having trouble and offered a "slider" to help get her in. This probably would have been helpful, but in the end, it worked out tragically. We had her half situated on the slider... which is basically a board with a round seat that can slide from one side to the other... so you can stick it under someone sitting in a wheelchair and the board balances between the wheelchair and another seat (in this case, the care front seat). They began to slide her over when she started to yelp in pain... the catheter tube had been caught in the wheelchair - moving her caused it to pull out about 6 inches.
Bob and Lauren's distress was more than a little high, as it was very apparent that something had gone wrong - Kathie was quickly soaked with fluid and was rushed back up to her room. For hours that morning, she had been begging them to get her out of the hospital, and there everyone was, back at square one - except in worse shape. An x-ray was immediately ordered to see where the tube was and wasn't and to determine the next step.
Kathie was offered two choices: 1) remove the tube... period or 2) remove the old tube and put in a new one. The existing tube was off some sort of track, so had to be removed either way. Kathie made it clear she did not want another tube in. Since some fluid had been drained, there was fear that the lung could collapse further, so they wanted her to stay overnight. Again, you can guess how little anyone was interested in that. After some discussion with doctors, including the ones that removed the old tube - it was decided that it was safe enough to take her home, as long as if she started having noticeable breathing changes that she was taken to the nearest hospital to have another tube put in to release some air.
An ambulance took her back to the house around 5. Kathie seems to be very happy to be back at home and Bob is sleeping in her room tonight to make sure she's okay. Everyone was slightly on edge today. It is very tempting to look at hindsight in this matter - but at the end of the day, Kathie wanted to do the procedure, and there was no way to know whether it would work one way or the other. It did not work, maintaining Kathie's poor habit of being in the low percentage of outcomes... but everyone had hope that it would relieve some of the trouble she has had breathing. Unfortunately, that did not happen - and many mishaps happened along the way - but she is back home now, and hopefully has some time left to spend at peace, out of the chaos of the hospital, with her family.
That being said, Lauren is (unhappily) heading back to school for about a week to catch back up on some work and get things organized so she can better work out of North Carolina for whatever time is necessary. Eddie will be coming back to the house tomorrow night and Lynette returns on Saturday. Updates may be a little slow during the transitions, but will be kept up as best as possible.
Bob has extra help with his brother, Richard and his wife, Mary Ann, for a few days.
We've been a little tardy in our thanks to Eddie's work friends again who supplied us with more delicious meals!
Posted by Lauren
Tuesday, March 25, 2008
Monday, March 24, 2008
A Comedy of Errors - But Not so Funny
This story begins on Easter Sunday. Christen had slept with Kathie Saturday night - Kathie woke up 4 times in the middle of the night, but of course, was sleeping soundly during the morning. Bob and Lauren got her out of bed after they returned from Mass to freshen up the bed and Lauren had her sitting in the wheelchair so she could give her a "bath." Kathie's skin is insanely dry and flaking off, so a nice rub with a washcloth followed by a lotion massage seems to make her feel a bit better. After the cleaning, she laid comfortably until right when everyone (Ed, Melissa, Alec, Emily, Christen, Bob, Lauren and Ben) was ready to sit for an Easter lunch (since Kathie had to leave for the hospital by 3). Bob ate in her room, so she could sit up for a bit. Melissa had prepared a wonderful Easter feast for everyone. Kathie laid back down towards the end of lunch - but only for about an hour nap. When Alec and Emily came in to say good-bye, Kathie opened her eyes and talked to them for a bit - proving once again that you have to be wearing a lab coat or be a grandchild to really get her attention;)
After she woke up to say goodbye, she decided she was ready to get up to leave for the hospital - almost an hour earlier than originally intended. Bob and Lauren finished getting her stuff ready to go and Eddie and Bob got her into the car and set up with her oxygen tank. Kathie travels in style - with an entourage of about 5 pillows and 2 ice packs;) As usual, she pretty much fell instantly back to sleep. She has been much more sleepy these days, and is only opening her eyes for very short amounts of time. Instead of talking, she's mostly been using hand signals - many of them rather humorous and cute. She still talks occasionally, but she is usually trying to save the breath since breathing is still pretty difficult.
Bob, Lauren and Kathie had a relatively uneventful drive to Winston-Salem. When they got to the hospital, admissions seemed very aware that she was coming. However, when they said that they were getting a room ready, Bob and Lauren should have known it was going to be a long day. The nurse who had told them to check in on Sunday said to be to the hospital by 4, they were there at 3:30ish. Kathie didn't have to wait long for a room - ironically the exact same one she was in 2 weeks ago, the hangers they brought were still in the closet. Shortly after getting Kathie settled in her bed, a nurse came in to start doing what we assumed was a routine quick check. Instead, she delved into a fairly thorough check over Kathie and asking a lot of questions about her condition. Slowly, but surely, it was becoming clear, she didn't know why they had brought Kathie in. This was quickly confirmed by the doctor that came in, also asking many questions... "So the plueral effusion is the only complaint?" Bob explained his frustration that they didn't seem to know why Kathie was there. Bob and Eddie had made sure Kathie had some lidocaine over where her port is so that if they needed to draw blood or put in an IV, it wouldn't hurt so much... and they waited awhile before they connected the IV to her port - Kathie also expressed frustration.
An x-ray came by with no warning - Bob declined letting them do it because she had just had one on Thursday and they were going to use something like a sonogram to do her procedure on Monday. The x-ray seemed to be more about satisfying someone's curiosity. A little later, a new doctor was on, and another x-ray machine appeared. Bob got slightly more frustrated (steam was not yet being released from his ears) and told the technician and accompanying nurse that no one had yet explained why Kathie needed an x-ray. The new doctor finally came in and Bob once again had to explain why Kathie was in the hospital in the first place. 2-3 hours in the hospital and there was still confusion. Lauren and Bob couldn't believe it... they had been told to bring Kathie in to get her coagulation numbers in the right place (her blood was too thin to safely do the procedure to drain her lung) and no one seemed to even know she was having the procedure done on Monday - it didn't seem to appear on the schedule.
3 or so hours after checking in, Kathie finally had some Vitamin K going through an IV, plasma through IVs scheduled for the morning and someone working on making sure she was on the schedule to have the pleural effusion taken care of. Bob and Lauren were still trying not to rip out their hair as nurses came in trying to give Kathie various drugs and take unnecessary vitals. It took several hours, but Bob finally got some people to understand that the purpose of the visit was for palliative treatment and they had zero interest in doing unnecessary tests or medications. The reason they had her in the hospital was to give her a chance to get more comfortable, not to cause greater unrest! In Wake's defense, this is the first time they've had a complaint with service at all - overall, the experience with the staff and treatment has been first rate.
Lauren spent the night at Ben's folks' house and Bob stayed at the hospital to make sure no one else tried to give Kathie unnecessary drugs, but did give her the right ones. At one point, they had on the "schedule" to give her morphine by suppository - use your imagination to guess the response to that. No, it was nicer than that... but the thought went through Lauren and Bob's heads.
Kathie woke up several times - thank goodness for the guardrails on the bed, because she may have fallen out otherwise the way she flew up. Needless to say, Bob did not exactly get a good night's sleep. The first bag of plasma came at 5 AM... The second around 8 AM, then there had to be a blood test - which took longer to hear back from than we would have liked. It was after noon before we heard that she was ready to go and on the list to have the procedure done. It was almost 1 before she was finally taken downstairs to radiology to do the appx 45 procedure. An hour and 15 minutes after she was taken into the room, she came back to the room.
The nurses seemed very positive, saying Kathie did great, didn't need extra pain medication and had about a liter drained off. Again... little warning bells should have gone off considering the last time Kathie had her lung drained there was significantly less fluid in her lungs and they had drained a liter.... hmmm. Anyway, warning bells did not go off in their heads, and they were told the paperwork was all ready to go once the doctor gave the okay. The doctor came in about 15 minutes later and explained a different story.
Kathie can't seem to get a break. Something (they presume one of her tumors in the lung) was blocking fluid from being drained, and the lung had not re-expanded because it still had a lot of fluid surrounding it. Bob and Lauren were told she would have to stay overnight so they could see if more would drain off overnight (she is attached to a dry suction chest drain that is attached to the catheter- it uses gravity to allow more fluid to drain out). An x-ray will be done in the morning to see if enough fluid was drained off and if the lung reinflated. What the x-ray shows will determine what type of apparatus Kathie will get sent home with; she'll either leave with a catheter and pump like the family had originally been expecting, that they can drain off themselves after a brief lesson, or she will go home with something like what she is attached to now, that will continuously drain. There may be a third option, but it is escaping me at the moment. Of course, Bob and Lauren had already called the family saying it had been a success and they would be leaving soon - but after the doctor left, they had to redo all the phone calls and reexplain the situation (again, why we wait to post sometimes).
There was some concern from Bob and Lauren that they were going to keep her unnecessarily. Since it was for palliative care to begin with, neither of them saw the point in her staying day after day or having more procedures done that weren't going to make anything better for Kathie. After being assured that the x-ray was important to establish the next step for home care, they settled in for the night and ordered Kathie "dinner." (Yesterday she ate a cup of ice cream and some bites of pear... tonight she managed a few bits of the ice cream, a bite or two of tomato soup and a bite or so of applesauce). The x-ray is scheduled for 7:30 AM Tuesday morning. Explicit directions were given to leave Kathie alone during the night unless they were called for if she wants morphine. Lauren is sleeping with her for the night. Bob left a bit after 8 PM to sleep at Ben's parents' house and Lauren got ready to spend the night. At about 10, Kathie woke up for a bit - the first time she was really alert today. She watched a bit of Dancing with the Stars with Lauren and got her Ativan for the evening. She was only up for about 15 minutes. Shortly after going back to sleep though, she woke back up and when Lauren asked her what she needed, she said "Awake." Lauren asked her how she was supposed to keep her awake, afterall, they had all been trying to do that over the last week when Kathie was super sleepy. Kathie made some hand motions for Lauren to talk - she didn't need to be asked twice:) Lauren and Kathie watched a bit of the Bachelor as they "chatted" (Lauren talked, Kathie used hand squeezes, facial expressions and an occasional word to respond) She stayed awake for another 10 or 15 minutes. Lauren asked her if she should keep trying to keep her awake, or if she was ready to go back to bed - needless to say, she went back to sleep.
The nurses have warned that they will be popping their heads in often to check the drain, but shouldn't be bothering Kathie, so let's hope that is the case. Tomorrow will be another long day, no matter what time they leave the hospital.
Posted by Lauren
After she woke up to say goodbye, she decided she was ready to get up to leave for the hospital - almost an hour earlier than originally intended. Bob and Lauren finished getting her stuff ready to go and Eddie and Bob got her into the car and set up with her oxygen tank. Kathie travels in style - with an entourage of about 5 pillows and 2 ice packs;) As usual, she pretty much fell instantly back to sleep. She has been much more sleepy these days, and is only opening her eyes for very short amounts of time. Instead of talking, she's mostly been using hand signals - many of them rather humorous and cute. She still talks occasionally, but she is usually trying to save the breath since breathing is still pretty difficult.
Bob, Lauren and Kathie had a relatively uneventful drive to Winston-Salem. When they got to the hospital, admissions seemed very aware that she was coming. However, when they said that they were getting a room ready, Bob and Lauren should have known it was going to be a long day. The nurse who had told them to check in on Sunday said to be to the hospital by 4, they were there at 3:30ish. Kathie didn't have to wait long for a room - ironically the exact same one she was in 2 weeks ago, the hangers they brought were still in the closet. Shortly after getting Kathie settled in her bed, a nurse came in to start doing what we assumed was a routine quick check. Instead, she delved into a fairly thorough check over Kathie and asking a lot of questions about her condition. Slowly, but surely, it was becoming clear, she didn't know why they had brought Kathie in. This was quickly confirmed by the doctor that came in, also asking many questions... "So the plueral effusion is the only complaint?" Bob explained his frustration that they didn't seem to know why Kathie was there. Bob and Eddie had made sure Kathie had some lidocaine over where her port is so that if they needed to draw blood or put in an IV, it wouldn't hurt so much... and they waited awhile before they connected the IV to her port - Kathie also expressed frustration.
An x-ray came by with no warning - Bob declined letting them do it because she had just had one on Thursday and they were going to use something like a sonogram to do her procedure on Monday. The x-ray seemed to be more about satisfying someone's curiosity. A little later, a new doctor was on, and another x-ray machine appeared. Bob got slightly more frustrated (steam was not yet being released from his ears) and told the technician and accompanying nurse that no one had yet explained why Kathie needed an x-ray. The new doctor finally came in and Bob once again had to explain why Kathie was in the hospital in the first place. 2-3 hours in the hospital and there was still confusion. Lauren and Bob couldn't believe it... they had been told to bring Kathie in to get her coagulation numbers in the right place (her blood was too thin to safely do the procedure to drain her lung) and no one seemed to even know she was having the procedure done on Monday - it didn't seem to appear on the schedule.
3 or so hours after checking in, Kathie finally had some Vitamin K going through an IV, plasma through IVs scheduled for the morning and someone working on making sure she was on the schedule to have the pleural effusion taken care of. Bob and Lauren were still trying not to rip out their hair as nurses came in trying to give Kathie various drugs and take unnecessary vitals. It took several hours, but Bob finally got some people to understand that the purpose of the visit was for palliative treatment and they had zero interest in doing unnecessary tests or medications. The reason they had her in the hospital was to give her a chance to get more comfortable, not to cause greater unrest! In Wake's defense, this is the first time they've had a complaint with service at all - overall, the experience with the staff and treatment has been first rate.
Lauren spent the night at Ben's folks' house and Bob stayed at the hospital to make sure no one else tried to give Kathie unnecessary drugs, but did give her the right ones. At one point, they had on the "schedule" to give her morphine by suppository - use your imagination to guess the response to that. No, it was nicer than that... but the thought went through Lauren and Bob's heads.
Kathie woke up several times - thank goodness for the guardrails on the bed, because she may have fallen out otherwise the way she flew up. Needless to say, Bob did not exactly get a good night's sleep. The first bag of plasma came at 5 AM... The second around 8 AM, then there had to be a blood test - which took longer to hear back from than we would have liked. It was after noon before we heard that she was ready to go and on the list to have the procedure done. It was almost 1 before she was finally taken downstairs to radiology to do the appx 45 procedure. An hour and 15 minutes after she was taken into the room, she came back to the room.
The nurses seemed very positive, saying Kathie did great, didn't need extra pain medication and had about a liter drained off. Again... little warning bells should have gone off considering the last time Kathie had her lung drained there was significantly less fluid in her lungs and they had drained a liter.... hmmm. Anyway, warning bells did not go off in their heads, and they were told the paperwork was all ready to go once the doctor gave the okay. The doctor came in about 15 minutes later and explained a different story.
Kathie can't seem to get a break. Something (they presume one of her tumors in the lung) was blocking fluid from being drained, and the lung had not re-expanded because it still had a lot of fluid surrounding it. Bob and Lauren were told she would have to stay overnight so they could see if more would drain off overnight (she is attached to a dry suction chest drain that is attached to the catheter- it uses gravity to allow more fluid to drain out). An x-ray will be done in the morning to see if enough fluid was drained off and if the lung reinflated. What the x-ray shows will determine what type of apparatus Kathie will get sent home with; she'll either leave with a catheter and pump like the family had originally been expecting, that they can drain off themselves after a brief lesson, or she will go home with something like what she is attached to now, that will continuously drain. There may be a third option, but it is escaping me at the moment. Of course, Bob and Lauren had already called the family saying it had been a success and they would be leaving soon - but after the doctor left, they had to redo all the phone calls and reexplain the situation (again, why we wait to post sometimes).
There was some concern from Bob and Lauren that they were going to keep her unnecessarily. Since it was for palliative care to begin with, neither of them saw the point in her staying day after day or having more procedures done that weren't going to make anything better for Kathie. After being assured that the x-ray was important to establish the next step for home care, they settled in for the night and ordered Kathie "dinner." (Yesterday she ate a cup of ice cream and some bites of pear... tonight she managed a few bits of the ice cream, a bite or two of tomato soup and a bite or so of applesauce). The x-ray is scheduled for 7:30 AM Tuesday morning. Explicit directions were given to leave Kathie alone during the night unless they were called for if she wants morphine. Lauren is sleeping with her for the night. Bob left a bit after 8 PM to sleep at Ben's parents' house and Lauren got ready to spend the night. At about 10, Kathie woke up for a bit - the first time she was really alert today. She watched a bit of Dancing with the Stars with Lauren and got her Ativan for the evening. She was only up for about 15 minutes. Shortly after going back to sleep though, she woke back up and when Lauren asked her what she needed, she said "Awake." Lauren asked her how she was supposed to keep her awake, afterall, they had all been trying to do that over the last week when Kathie was super sleepy. Kathie made some hand motions for Lauren to talk - she didn't need to be asked twice:) Lauren and Kathie watched a bit of the Bachelor as they "chatted" (Lauren talked, Kathie used hand squeezes, facial expressions and an occasional word to respond) She stayed awake for another 10 or 15 minutes. Lauren asked her if she should keep trying to keep her awake, or if she was ready to go back to bed - needless to say, she went back to sleep.
The nurses have warned that they will be popping their heads in often to check the drain, but shouldn't be bothering Kathie, so let's hope that is the case. Tomorrow will be another long day, no matter what time they leave the hospital.
Posted by Lauren
Saturday, March 22, 2008
Delayed Update
Sorry for the delay in updates.
Not too much has changed from the "normal" routine mentioned previously. A few nights ago, she came out to watch Enchanted with us. The next night she came out to watch Dancing with the Stars and then directed some picture hanging. The NC house is slowly but surely becoming a home. After returning to bed, Christen, Lauren and Carole joined her to watch The Bachelor - ahh, guilty pleasures. We've also played a couple of hands of euchre with her, and Lauren was playing a game of rummy with her one day. Carole started her doing some stretches and made some notes so we could keep doing it after they left on Tuesday. Kathie's been pretty good about doing them - though sometimes she'll keep her eyes closed while she does them;)
Thursday, Kathie had a full day. EARLY in the morning, Bob, Kathie and Lauren made the trek to Wake Forest Baptist hospital for an x-ray and meeting with Dr. Aklilu. The x-ray did show more fluid and Kathie was scheduled to treat the pleural effusion (fancy name for fluid in space surrounding the lungs) - aka, she's having it drained and then a catheter will be left in so she or we can drain it when she's at home if she's having difficulty breathing. Since her right lung barely sounded like it had air going through it, we're hoping this will enormously relieve some of Kathie's breathing troubles - but there are no guarantees.
The meeting with Dr. Aklilu was what I suppose we all expected, but not what we hoped for. He maintained his earlier conversation with Kathie, that the cancer is taking over and standard treatment is off the table. (A night or two before the appointment, we had received a very unexpected call from Dr. Eng - her oncologist from MD Anderson, telling us about a clinical trial opening up - but she wasn't fully aware of the current situation). We asked about a couple of alternative treatments, and he said he supported trying alternatives during this time, since conventional chemo had failed her. He also reminded us that being in hospice care did not mean one was dying tomorrow. Dr. Aklilu did not estimate any time - but he also did not take back his statement that he made to the family at the hospital. Either way, the chat with him was good, and gave Kathie a chance to clear up things that she couldn't remember from the hospital. This is also where they chatted about the pleural effusion and the catheter and how it will hopefully help with her breathing to make her more comfortable.
To check on her blood coagulation, she had to have some blood work done. She had some done by hospice two days before the appointment, but the results hadn't reached Dr. Aklilu by the time of the appointment, so he was requesting his own tests. Kathie hadn't anticipated having more blood work, so she hadn't numbed her port so Dr. Aklilu's assistant, Suzanne, made an appointment at the Lexington clinic that is partners with them. Kathie had about a 2 hour break at the house before getting back in the car to go to the clinic and then Bob, Kathie and Lauren waited about a half hour before she was seen. Needless to say, at the end of the day, she was pooped.
The blood tests showed she need to come in early before her procedure to boost up her blood coagulation. Kathie will get checked in tomorrow (she seems to have something for needing things done during holidays... Memorial Day weekend - diagnosis, Christmas -hospital for sinus infection and now Easter) to give her something to increase blood coagulation and then the procedure will be done on Monday to remove the fluid.
The next step is for us to see where hospice stands on some of these alternatives. Since they are not recognized medically, we're hoping it will not fall under the effort to "prolong life" even though that's pretty much exactly what they are. During the last chat with Tammy, our hospice nurse, on the subject - she reminded us that this branch is also palliative care and that even if you leave hospice, you can change your mind the next day and re-enter it. The final call is up to Kathie in the end. She still seems to have a bit of fighting spirit - but it is about weighing the pros and cons and if doing any additional types of treatment will really add to a better quality of life.
There is also the issue that Kathie has started to develop a little bit of yellow in her eye - not usually a good sign. She has also started to "sleep talk" more - she won't wake up quite as often, and even when she does seem kind of awake, she'll say something that doesn't exactly make sense. That being said... an hour after saying some things that did not make sense to us... she completely woke up and wanted to go sit outside.
We got her in her geri chair and made up some margaritas:) Bob, Eddie, Christen, Ben and Lauren sat outside with her and sipped on margaritas while chatting (Lynette and the girls left in the morning for Eddie and Melissa's house because they had an early flight out Saturday morning). Mostly, we talked about how none of us would have gotten through school without her (or at least our projects would have gotten worse grades;) ) It was an absolutely gorgeous day overlooking the lake. She was outside at least an hour and was awake a good part of that.
This one is pretty cute, and shows she was awake and did smile;) The other one is Christen toasting with Kathie - she smiled at some point during this, but my camera is slow, and didn't catch it.
Before Lynette and the girls left, the girls got dressed up in a red polka dotted dresses that Kathie had gotten for them and took a picture with her and an old Shirley Temple doll who was also wearing a red polka dotted dress. It was pretty adorable too.
Posted by Lauren
Not too much has changed from the "normal" routine mentioned previously. A few nights ago, she came out to watch Enchanted with us. The next night she came out to watch Dancing with the Stars and then directed some picture hanging. The NC house is slowly but surely becoming a home. After returning to bed, Christen, Lauren and Carole joined her to watch The Bachelor - ahh, guilty pleasures. We've also played a couple of hands of euchre with her, and Lauren was playing a game of rummy with her one day. Carole started her doing some stretches and made some notes so we could keep doing it after they left on Tuesday. Kathie's been pretty good about doing them - though sometimes she'll keep her eyes closed while she does them;)
Thursday, Kathie had a full day. EARLY in the morning, Bob, Kathie and Lauren made the trek to Wake Forest Baptist hospital for an x-ray and meeting with Dr. Aklilu. The x-ray did show more fluid and Kathie was scheduled to treat the pleural effusion (fancy name for fluid in space surrounding the lungs) - aka, she's having it drained and then a catheter will be left in so she or we can drain it when she's at home if she's having difficulty breathing. Since her right lung barely sounded like it had air going through it, we're hoping this will enormously relieve some of Kathie's breathing troubles - but there are no guarantees.
The meeting with Dr. Aklilu was what I suppose we all expected, but not what we hoped for. He maintained his earlier conversation with Kathie, that the cancer is taking over and standard treatment is off the table. (A night or two before the appointment, we had received a very unexpected call from Dr. Eng - her oncologist from MD Anderson, telling us about a clinical trial opening up - but she wasn't fully aware of the current situation). We asked about a couple of alternative treatments, and he said he supported trying alternatives during this time, since conventional chemo had failed her. He also reminded us that being in hospice care did not mean one was dying tomorrow. Dr. Aklilu did not estimate any time - but he also did not take back his statement that he made to the family at the hospital. Either way, the chat with him was good, and gave Kathie a chance to clear up things that she couldn't remember from the hospital. This is also where they chatted about the pleural effusion and the catheter and how it will hopefully help with her breathing to make her more comfortable.
To check on her blood coagulation, she had to have some blood work done. She had some done by hospice two days before the appointment, but the results hadn't reached Dr. Aklilu by the time of the appointment, so he was requesting his own tests. Kathie hadn't anticipated having more blood work, so she hadn't numbed her port so Dr. Aklilu's assistant, Suzanne, made an appointment at the Lexington clinic that is partners with them. Kathie had about a 2 hour break at the house before getting back in the car to go to the clinic and then Bob, Kathie and Lauren waited about a half hour before she was seen. Needless to say, at the end of the day, she was pooped.
The blood tests showed she need to come in early before her procedure to boost up her blood coagulation. Kathie will get checked in tomorrow (she seems to have something for needing things done during holidays... Memorial Day weekend - diagnosis, Christmas -hospital for sinus infection and now Easter) to give her something to increase blood coagulation and then the procedure will be done on Monday to remove the fluid.
The next step is for us to see where hospice stands on some of these alternatives. Since they are not recognized medically, we're hoping it will not fall under the effort to "prolong life" even though that's pretty much exactly what they are. During the last chat with Tammy, our hospice nurse, on the subject - she reminded us that this branch is also palliative care and that even if you leave hospice, you can change your mind the next day and re-enter it. The final call is up to Kathie in the end. She still seems to have a bit of fighting spirit - but it is about weighing the pros and cons and if doing any additional types of treatment will really add to a better quality of life.
There is also the issue that Kathie has started to develop a little bit of yellow in her eye - not usually a good sign. She has also started to "sleep talk" more - she won't wake up quite as often, and even when she does seem kind of awake, she'll say something that doesn't exactly make sense. That being said... an hour after saying some things that did not make sense to us... she completely woke up and wanted to go sit outside.
We got her in her geri chair and made up some margaritas:) Bob, Eddie, Christen, Ben and Lauren sat outside with her and sipped on margaritas while chatting (Lynette and the girls left in the morning for Eddie and Melissa's house because they had an early flight out Saturday morning). Mostly, we talked about how none of us would have gotten through school without her (or at least our projects would have gotten worse grades;) ) It was an absolutely gorgeous day overlooking the lake. She was outside at least an hour and was awake a good part of that.
This one is pretty cute, and shows she was awake and did smile;) The other one is Christen toasting with Kathie - she smiled at some point during this, but my camera is slow, and didn't catch it.Before Lynette and the girls left, the girls got dressed up in a red polka dotted dresses that Kathie had gotten for them and took a picture with her and an old Shirley Temple doll who was also wearing a red polka dotted dress. It was pretty adorable too.
Posted by Lauren
Sunday, March 16, 2008
Catch up
The last few days are what has started to feel "normal." One person sleeps on an air mattress in Kathie's room to help out if she starts coughing or needs help getting out of bed to go to the bathroom, and someone sleeps on the couch in the family room as a second helper if needed. At about 7 or 8, someone else comes and relieves the sleep deprived;) Kathie has actually been sleeping through most of the night. She usually has to use the restroom once and occasionally asks for some pain or nausea medication. Sometimes a burp and a sip of a drink meet in her pipes and a coughing fit ensues for a bit. We bump her oxygen up to 3 until she can catch her breath, and the rest of the time it stays at about 2. Kathie keeps an ice pack on her front left abdomen most of the time, and now sometimes one on the bottom right of her back.
She still naps most of the day, but is very alert when she wakes up and everyone has been having good chats with her. We've even gotten her up in a chair a few times. Two nights ago, she came out and watched Snow White with Kaitlyn and Sophie. While she was out in the chair, we also watched the video Christen made for her 50th surprise birthday party. She's still drinking quite a bit of water, tea and milk, and occasionally is being indulged with Root Beer, Coke and Ginger Ale. Kathie has been trying different foods here and there, but Dr. Aklilu told us not to force anything on her... so we just offer what's around and leave it up to her. The other day, Bob made some prototype of the centerpieces Lauren wants for the wedding, and Kathie approved/made suggestions for how to improve upon them. She also came out this morning and directed where to hang some of the pictures (all of Lauren's suggestions for the dining room got vetoed - man, she's a tough sell!)
Cathy and Danny left on Friday and Kathie's sisters, Carole and Eileen got into town Saturday evening. Today, her brother, Billy, and sister-in-law, Maureen stopped in for a short visit as well. Ben and Lauren braved taking the four kids to go see Horton Hears a Who, so the visitors could enjoy some more personal time with Kathie. Carole is a physical therapist (or physical "terrorist" as commonly said;) - so she's going to go ahead and play that role here, trying to get Kathie to move around some more.
If you saw Kathie on Sunday, and saw her today - you would barely think you were looking at the same person. She has an appointment on Thursday with Dr. Aklilu to go back over the information and to see if the blood tests look the same, or if the prognosis is at least slightly better than originally thought (when looking at her at her worst on Sunday). The reality though, is that the cancer in her lungs had metastasized further in just a week, so it is unlikely the situation is completely different, but rather, that we may be blessed with a little more time with her than originally expected.
(By the way... it was mentioned that Kathie had "lost a few days" - she lost Friday through Monday... and maybe part of Tuesday. She only lost the memory of it, as far as we're concerned - she seemed to be aware during the time of what she was asking for - when she was in pain, she expressed it, she got up to go the bathroom, etc... the serious note was written on Wednesday when she was fully aware of what was going on).
In other news, we are being well-fed. Some of Eddie's work friends arranged a bunch of meals for us - and they are delicious! Melissa has also prepared a few wonderful ones, and Lynette and Lauren tested their skill at making Kathie's fresh cream of broccoli soup. Kathie seemed to approve of it. Christen and Lynette have made some more of the vegan dishes, finishing up the enormous amount of fresh veggies and fruit laying around. Today, Melissa brought over a gift from the Wielands (Purdue friends of Eddie and Melissa who helped house some of the family when Kathie was down at MD Anderson) - Chocolate covered strawberries and chocolate chip cookies. Everyone staked a claim quickly to one - and we put two aside for Kathie (she requested white chocolate with dark chocolate on it). She took a couple of bites this afternoon and said, "delicious." Kathie also got a package from some of her old friends with some beautiful CDs, some movies and nice poem.
We keep going... thanks again for all the thoughts and prayers.
Posted by Lauren
She still naps most of the day, but is very alert when she wakes up and everyone has been having good chats with her. We've even gotten her up in a chair a few times. Two nights ago, she came out and watched Snow White with Kaitlyn and Sophie. While she was out in the chair, we also watched the video Christen made for her 50th surprise birthday party. She's still drinking quite a bit of water, tea and milk, and occasionally is being indulged with Root Beer, Coke and Ginger Ale. Kathie has been trying different foods here and there, but Dr. Aklilu told us not to force anything on her... so we just offer what's around and leave it up to her. The other day, Bob made some prototype of the centerpieces Lauren wants for the wedding, and Kathie approved/made suggestions for how to improve upon them. She also came out this morning and directed where to hang some of the pictures (all of Lauren's suggestions for the dining room got vetoed - man, she's a tough sell!)
Cathy and Danny left on Friday and Kathie's sisters, Carole and Eileen got into town Saturday evening. Today, her brother, Billy, and sister-in-law, Maureen stopped in for a short visit as well. Ben and Lauren braved taking the four kids to go see Horton Hears a Who, so the visitors could enjoy some more personal time with Kathie. Carole is a physical therapist (or physical "terrorist" as commonly said;) - so she's going to go ahead and play that role here, trying to get Kathie to move around some more.
If you saw Kathie on Sunday, and saw her today - you would barely think you were looking at the same person. She has an appointment on Thursday with Dr. Aklilu to go back over the information and to see if the blood tests look the same, or if the prognosis is at least slightly better than originally thought (when looking at her at her worst on Sunday). The reality though, is that the cancer in her lungs had metastasized further in just a week, so it is unlikely the situation is completely different, but rather, that we may be blessed with a little more time with her than originally expected.
(By the way... it was mentioned that Kathie had "lost a few days" - she lost Friday through Monday... and maybe part of Tuesday. She only lost the memory of it, as far as we're concerned - she seemed to be aware during the time of what she was asking for - when she was in pain, she expressed it, she got up to go the bathroom, etc... the serious note was written on Wednesday when she was fully aware of what was going on).
In other news, we are being well-fed. Some of Eddie's work friends arranged a bunch of meals for us - and they are delicious! Melissa has also prepared a few wonderful ones, and Lynette and Lauren tested their skill at making Kathie's fresh cream of broccoli soup. Kathie seemed to approve of it. Christen and Lynette have made some more of the vegan dishes, finishing up the enormous amount of fresh veggies and fruit laying around. Today, Melissa brought over a gift from the Wielands (Purdue friends of Eddie and Melissa who helped house some of the family when Kathie was down at MD Anderson) - Chocolate covered strawberries and chocolate chip cookies. Everyone staked a claim quickly to one - and we put two aside for Kathie (she requested white chocolate with dark chocolate on it). She took a couple of bites this afternoon and said, "delicious." Kathie also got a package from some of her old friends with some beautiful CDs, some movies and nice poem.
We keep going... thanks again for all the thoughts and prayers.
Posted by Lauren
Thursday, March 13, 2008
The Roller coaster
So, yesterday, Kathie asks Lauren to write a very serious note, as you read in the previous entry. But then, today, like yesterday, she was extremely lucid for long periods of time. Lauren spoke with her this morning for an hour and they realized that Kathie had lost a few days - she couldn't remember any of her time in the hospital. Lauren walked her back through what she knew, and Kathie understood that she is in hospice, but couldn't completely remember her conversation with Dr. Aklilu.
Kathie even made it to the breakfast table - thanks to the geri chair that was brought over last night. She had some tea, a pancake, a bit of eggs and sausage (did I mention we completely gave up the diet?) She took a nap afterwards, but then visited with the grandkids when they returned from Ed and Melissa's. Christen sat with her afterwards for awhile before she took another little nap. Though she's still having some pain in her side, it seems that a frozen wet towel in a Ziplock bag helps keep it under control. She did ask for some pain med this morning, and a tiny bit this evening - but we have learned not to ask her if she wants some... or we get "the look." The kids had all gone to the park with Eddie, Lynette and Chris, but when they returned, everyone went into "mom's room" so Grandma could watch Emily open her birthday presents.
The hospice nurse came today and after looking at Kathie, she recognized that she looks about 100x better than she did on Tuesday. The discoloration in her feet is mostly gone, there isn't a crackling sound in her lungs when she breathes, and she is clearly more alert. However, her right lung has very little air going into it it because of the fluid pressing on the outside lining. So the question on our minds today was whether this was a "rally" (a perk-up near the end, that we've read about - it can happen several times), or if she is not as bad as we thought on Sunday, when Dr. Aklilu gave us the news. Bob and Kathie expressed this to Tammy, our hospice nurse. Tammy said she would be happy to do a conference call with Dr. Aklilu and run some blood tests to see if maybe Kathie is doing a bit better than we thought, and also so Kathie can hear personally from Dr. Aklilu what the situation is (since she only partially remembers speaking with him). Only time will tell if this perk up is a recovery from being in the hospital, if it's a "rally" or if she's actually a bit better than we expected.
Tammy did suggest that we give it the weekend, to see if mom is going to have ups and downs, since it has only been 2 full days of ups and since we know that either way, the cancer has continued to spread.
Posted by Lauren
Kathie even made it to the breakfast table - thanks to the geri chair that was brought over last night. She had some tea, a pancake, a bit of eggs and sausage (did I mention we completely gave up the diet?) She took a nap afterwards, but then visited with the grandkids when they returned from Ed and Melissa's. Christen sat with her afterwards for awhile before she took another little nap. Though she's still having some pain in her side, it seems that a frozen wet towel in a Ziplock bag helps keep it under control. She did ask for some pain med this morning, and a tiny bit this evening - but we have learned not to ask her if she wants some... or we get "the look." The kids had all gone to the park with Eddie, Lynette and Chris, but when they returned, everyone went into "mom's room" so Grandma could watch Emily open her birthday presents.
The hospice nurse came today and after looking at Kathie, she recognized that she looks about 100x better than she did on Tuesday. The discoloration in her feet is mostly gone, there isn't a crackling sound in her lungs when she breathes, and she is clearly more alert. However, her right lung has very little air going into it it because of the fluid pressing on the outside lining. So the question on our minds today was whether this was a "rally" (a perk-up near the end, that we've read about - it can happen several times), or if she is not as bad as we thought on Sunday, when Dr. Aklilu gave us the news. Bob and Kathie expressed this to Tammy, our hospice nurse. Tammy said she would be happy to do a conference call with Dr. Aklilu and run some blood tests to see if maybe Kathie is doing a bit better than we thought, and also so Kathie can hear personally from Dr. Aklilu what the situation is (since she only partially remembers speaking with him). Only time will tell if this perk up is a recovery from being in the hospital, if it's a "rally" or if she's actually a bit better than we expected.
Tammy did suggest that we give it the weekend, to see if mom is going to have ups and downs, since it has only been 2 full days of ups and since we know that either way, the cancer has continued to spread.
Posted by Lauren
Take the bumpy road with laughs
This is a long entry (trying to catch up on two days and a message from Kathie at the end – so if you are in a hurry, skip down to after the asterisks)
A MESSAGE FROM KATHIE:
Dear Family and Friends,
Thank you hardly seems adequate to express just how grateful I am for what your support and prayers have meant to me and my family during this difficult journey. At last count, we had three failed chemo treatments to keep the cancer in check. We then decided to look at less conventional treatments while we studied clinical trial options. During the meantime, I was relying on the power of prayer and God’s mercy in working miracles.
It is unbelievable to realize just how many people have come into my life and the impact they have had on me. I wish I could thank each and everyone individually, and being the procrastinator that I am, I now know that is not possible. I guess I was hoping for a Hail Mary [classic Kathie pun], but I now know that is not possible, unless Mother Teresa pitches one in. God bless each and every one for making this journey with me.
May He always hold you in the palm of His hand as He has held me.
~ Kathie
Monday, March 10, 2008
A bit more lucid
At about 10 last night, only Bob, Lauren and Eddie remained at the hospital. Though Kathie wouldn't keep her eyes open for more than a few seconds at a time, she seemed to be taking everything in, and her sense of humor remained. When we were teasing her about the fact we kept bugging her to wake up, Eddie made a comment to Kathie about punching Bob - she bobbed her head one way and then to the next... very Kathie... very funny.
Eddie turned in, heading to Lexington, and Bob stayed with Lauren a bit longer. Unfortunately for Eddie, Kathie woke up for a bit about 20 minutes after he left. She communicated with a few words here and there with them - and both Bob and Lauren had a chance to tell her they loved her while they were sure she could hear. Kathie made a few comments about hearing everyone all day in the hospital room - and let me tell you, there were a gaggle of us (part of the downside - or maybe the positive - to having 4 kids and a planet full of friends!). Bob left a little after 10:30 when Kathie had gone back to sleep - after some nausea and pain meds.
Lauren stayed overnight at the hospital. Ben drove in from Atlanta yesterday and stayed at the hospital with Lauren until after midnight. At 1:20 AM, Kathie started to try to pull herself up. Lauren asked her where she was trying to go and thought she heard that she "needed to get to the party" - but "party" actually translated to "potty." We were all thrilled that Kathie has gotten up to use the bathroom a couple times - meaning her kidneys haven't completely given up yet, and that it was good to see her up, even if she needed lots of assistance. She asked for a little more pain meds then, and again at 6:30 when she woke up and tried to sit up again.
We have been using increments of low doses of pain meds so that she has the opportunity to be a bit more lucid. It seemed to work, because she was awake this morning and said a few things here and there. The swallow test went well - Kathie drank almost a full thing of milk and ate some graham crackers and applesauce.
Ben went to the house in Lexington to hang out with Kait and Sophie so Christen and Glenda could come visit at the hospital. Lynette went with Lauren to the florist.
The gist of the rest of the day, is that Kathie was mostly out of it still - though occasionally said a few words, and she nods in response to most direct questions. Eddie has become the best at translating these nods, and she seems to respond the most when he asks her a serious question, or asks her to wake up for a bit. She has told all the kids that she loves them, though sometimes through a hand squeeze rather than words.
We have been regularly checking up on her pain levels since our number one goal is to keep that low.
A social worker came in to discuss hospice. I missed the first conversation, but they got their "choice" of hospice (one had an in-patient clinic available if necessary, the other one you'd have to check into a hospital... the Lexington hospital - Bob picked the first one). The hospice people were, as usual, wonderful. The program they have is incredible - and the people who are involved are just about the warmest people you'll ever meet, though the hospital staff at Wake has been pretty great too.
Kathie was moved back to the house by ambulance at about 6:40. She got to enjoy being in her own bed until about 10 when her hospital bed, oxygen, and table were set up by the hospice staff in the sunroom. While she was in her room, the kids and guests (her best friend from 6th grade, Cathy, her husband, Danny and another long-time family friend, Glenda) rotated through. Glenda and Lauren shared stories, trying to remind Kathie of some great times.
Needless to say, it has been an emotional day. The diet for everyone has gone to hell, as we decided pizza was definitely easier during this transition time (when at one point we had the electrical guy and the pest guy here at the same time, followed shortly later by Kathie getting here, followed shortly after by the hospice supply delivery). The house is pretty full. Eddie is sleeping on an air mattress next to Kathie for this evening - making sure the oxygen stays on and if she needs to go to the bathroom, someone is ready to help.
She is still able to swallow some pills (while we're waiting for some liquid ones to become available within the next couple of days or so).
Thanks for the notes and the prayers!
Posted by Lauren
Eddie turned in, heading to Lexington, and Bob stayed with Lauren a bit longer. Unfortunately for Eddie, Kathie woke up for a bit about 20 minutes after he left. She communicated with a few words here and there with them - and both Bob and Lauren had a chance to tell her they loved her while they were sure she could hear. Kathie made a few comments about hearing everyone all day in the hospital room - and let me tell you, there were a gaggle of us (part of the downside - or maybe the positive - to having 4 kids and a planet full of friends!). Bob left a little after 10:30 when Kathie had gone back to sleep - after some nausea and pain meds.
Lauren stayed overnight at the hospital. Ben drove in from Atlanta yesterday and stayed at the hospital with Lauren until after midnight. At 1:20 AM, Kathie started to try to pull herself up. Lauren asked her where she was trying to go and thought she heard that she "needed to get to the party" - but "party" actually translated to "potty." We were all thrilled that Kathie has gotten up to use the bathroom a couple times - meaning her kidneys haven't completely given up yet, and that it was good to see her up, even if she needed lots of assistance. She asked for a little more pain meds then, and again at 6:30 when she woke up and tried to sit up again.
We have been using increments of low doses of pain meds so that she has the opportunity to be a bit more lucid. It seemed to work, because she was awake this morning and said a few things here and there. The swallow test went well - Kathie drank almost a full thing of milk and ate some graham crackers and applesauce.
Ben went to the house in Lexington to hang out with Kait and Sophie so Christen and Glenda could come visit at the hospital. Lynette went with Lauren to the florist.
The gist of the rest of the day, is that Kathie was mostly out of it still - though occasionally said a few words, and she nods in response to most direct questions. Eddie has become the best at translating these nods, and she seems to respond the most when he asks her a serious question, or asks her to wake up for a bit. She has told all the kids that she loves them, though sometimes through a hand squeeze rather than words.
We have been regularly checking up on her pain levels since our number one goal is to keep that low.
A social worker came in to discuss hospice. I missed the first conversation, but they got their "choice" of hospice (one had an in-patient clinic available if necessary, the other one you'd have to check into a hospital... the Lexington hospital - Bob picked the first one). The hospice people were, as usual, wonderful. The program they have is incredible - and the people who are involved are just about the warmest people you'll ever meet, though the hospital staff at Wake has been pretty great too.
Kathie was moved back to the house by ambulance at about 6:40. She got to enjoy being in her own bed until about 10 when her hospital bed, oxygen, and table were set up by the hospice staff in the sunroom. While she was in her room, the kids and guests (her best friend from 6th grade, Cathy, her husband, Danny and another long-time family friend, Glenda) rotated through. Glenda and Lauren shared stories, trying to remind Kathie of some great times.
Needless to say, it has been an emotional day. The diet for everyone has gone to hell, as we decided pizza was definitely easier during this transition time (when at one point we had the electrical guy and the pest guy here at the same time, followed shortly later by Kathie getting here, followed shortly after by the hospice supply delivery). The house is pretty full. Eddie is sleeping on an air mattress next to Kathie for this evening - making sure the oxygen stays on and if she needs to go to the bathroom, someone is ready to help.
She is still able to swallow some pills (while we're waiting for some liquid ones to become available within the next couple of days or so).
Thanks for the notes and the prayers!
Posted by Lauren
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