Mom and I are hanging out today. We had a light breakfast (her new favorite Cinnamon Toast Crunch cereal) and some fluids. We watched some cheerleading competition because we were amazed at how they flip people around. We are going to slide into the bath and do her fingernails today. Mom was off her normal sleep pattern last night so we don't have big things planned for today.
Chad (my minister - you have seen him mentioned in other posts. Cindy is his wife and also my minister - How cool is that?) listened thru a 10 minute rant from me today. I know how isolated and helpless you guys reading the blog feel about Mom and not being here. I know you miss her and want to see her. But I am here and I am helpless also. I can't make her well, some days I can't make her comfortable, some days I can't get her to eat, and some days it is all I can do to say what she needs to hear. If you talk to me, and I answer a question in a generic way, you may be asking me something that I can not bear to answer right now. I may be able to answer later, but this is as new to me and Wendy as it is to you. This is my mom, and right now, we are making decisions that no child should ever have to make.
Saturday, April 12, 2008
Friday, April 11, 2008
Friday Night
We had a busy day again today. Mom ate a good breakfast, we had a visit from Hospice of Wake County, fluids, and then PT. Mom is having a little pain, but this is controlled by her breakthru meds. Wendy is coming Sunday to visit after church. For some reason, we are both tired today and took a good nap in the afternoon.
Tomorrow:
1. Bath and nails. Mom has serious claws at this point.
2. Fluids
We are going to try and rest Saturday to see if we can make it to church on Sunday. Will play this by ear. I am actually one of the Elders for the AM service. It is Survivor Sunday with a big breakfast and communion. I have not been a good church member this year. I came back on Session this year but haven't made any of the meetings. Bruce has been covering our Sunday School class for the past few weeks. I need to thank everyone for picking up my slack here and for how my church family has wrapped their arms around me and Mom. I miss my little Sunday School guys something fierce and the choir guys. Maybe once we settle down, I can sneak out every once and a while.
I talked w/Mom's friend Ron today and he is going to come see Mom on Monday. Mom is excited.
If mom gets all houchied up for Sunday, will try and take a picture and stick up here.
We are in the process of turning off Mom's phone. I will add my phone number to her voice mail message until this gets done. [May be a month or so here.] If you can pass both the blog information and my home information to whoever you can think of, that would be great.
Tomorrow:
1. Bath and nails. Mom has serious claws at this point.
2. Fluids
We are going to try and rest Saturday to see if we can make it to church on Sunday. Will play this by ear. I am actually one of the Elders for the AM service. It is Survivor Sunday with a big breakfast and communion. I have not been a good church member this year. I came back on Session this year but haven't made any of the meetings. Bruce has been covering our Sunday School class for the past few weeks. I need to thank everyone for picking up my slack here and for how my church family has wrapped their arms around me and Mom. I miss my little Sunday School guys something fierce and the choir guys. Maybe once we settle down, I can sneak out every once and a while.
I talked w/Mom's friend Ron today and he is going to come see Mom on Monday. Mom is excited.
If mom gets all houchied up for Sunday, will try and take a picture and stick up here.
We are in the process of turning off Mom's phone. I will add my phone number to her voice mail message until this gets done. [May be a month or so here.] If you can pass both the blog information and my home information to whoever you can think of, that would be great.
Thursday, April 10, 2008
Journey
Today, we spoke with one of the hospices in Wake County. They sent one of their social workers out to talk with us at home. I didn't realize how many different hospice offerings are available, both for and non-profit. We are in a holding pattern until Mom/Wendy and I decide which hospice we will use. We have IV/PT coverage for the next 2 weeks and we have enough meds to give us time to make a decision. Chad came and sat with us for the beginning of this discussion today. We needed to have someone hear the conversation that is not right in the middle of the decision.
The hospice word of the day is "Journey". This is all over the printed materials and also is used quite frequently in any conversations. I can't wrap my mind around the use of this word in this context. Maybe later, but now, it doesn't feel like a journey but more of a huge running flying leap. A leap to think these people will care for mom with compassion and kindness, a leap to think "Mom is really sick", a leap to hear people so matter of fact talk about something that I can not even bring myself to think about, a leap to get over the why, a leap to remember the substance of things hoped for.
Mom is having a little more continuous pain today that is being covered with her breakthru meds. This is the first day we have taken them twice during the day. We had some fluids this morning and Lois came back to change Mom's access. This day was less busy than it looked on paper. I had Richard coming today, when he will actually be here Friday. We have another hospice coming to talk with us on Friday. It is getting harder to find something that Mom will eat or even thinks she might eat. Mom had a bacon and egg sandwich this morning, a few bites of lasagna for lunch and a few bites of a turkey Ruben for dinner. She had a Cherry Blizzard and some cookies during the day plus a couple of Ensures. She is off the Toaster Strudel kick for a while it seems.
On a side note, since this is rambling, if anyone would like to post anything to the blog, just email it to me and I will add it. Again, thanks to all of you to care about Mom. Please feel free to call Mom. Send me an email and I will send you our home number. We are getting ready to try an either reduce the minutes on Mom's phone or try to get out of the contract with Verizon (best case).
The hospice word of the day is "Journey". This is all over the printed materials and also is used quite frequently in any conversations. I can't wrap my mind around the use of this word in this context. Maybe later, but now, it doesn't feel like a journey but more of a huge running flying leap. A leap to think these people will care for mom with compassion and kindness, a leap to think "Mom is really sick", a leap to hear people so matter of fact talk about something that I can not even bring myself to think about, a leap to get over the why, a leap to remember the substance of things hoped for.
Mom is having a little more continuous pain today that is being covered with her breakthru meds. This is the first day we have taken them twice during the day. We had some fluids this morning and Lois came back to change Mom's access. This day was less busy than it looked on paper. I had Richard coming today, when he will actually be here Friday. We have another hospice coming to talk with us on Friday. It is getting harder to find something that Mom will eat or even thinks she might eat. Mom had a bacon and egg sandwich this morning, a few bites of lasagna for lunch and a few bites of a turkey Ruben for dinner. She had a Cherry Blizzard and some cookies during the day plus a couple of Ensures. She is off the Toaster Strudel kick for a while it seems.
On a side note, since this is rambling, if anyone would like to post anything to the blog, just email it to me and I will add it. Again, thanks to all of you to care about Mom. Please feel free to call Mom. Send me an email and I will send you our home number. We are getting ready to try an either reduce the minutes on Mom's phone or try to get out of the contract with Verizon (best case).
Wednesday, April 9, 2008
Go Speed Racer
Mom is warm and snug in the big bed and is sleeping.
I woke up this morning and did a little work before Mom woke up. She woke up about 7:30 and moved to the couch. She had a couple of Toaster Strudel (her new favorite thing) and I made some phone calls. I talked w/Susan again this morning and she pointed me in a couple of different directions for Hospice. I talked with Mom's BC caseworker about this and she may have an idea about the Ensure. She left a message while we were on the road. I also talked w/my Dr's office to see if they were accepting patients and if they would take Mom as a new patient. [Yes - Plus I can swing by and pick up the paperwork and drop it off beforehand - Mom has an appointment next Tuesday to meet Jason before we need him for anything. Problem that is if Mom has a cold or something like that, we needed someone to call.]
I jumped in the shower, Mom got dressed and we stopped by Leapin' Lizards for a frozen drink for the road. If you don't know where I live, to get from Fuquay to Mom's, I go 55 to 64 to 421 to the 40/85 Bypass and then jump on Bryan Blvd. It is about 85 miles from my doorstep to her doorstep. Well, Mom and I are talking about Hospice, I am not paying attention and I GET A SPEEDING TICKET. (70 in a 55). I didn't argue, I had no idea how fast I was going. [I have a big old Volvo Station Wagon. 15 mph and 90 mph feel the exact same. ] I have never had a speeding ticket before.. I am crying, Mom is over there telling him we are going to the Chemo Dr, my hands are shaking, I can't get my driver's license out... I get the ticket and I just sit there and cry for a couple of minutes. The Highway Patrol guy pulls out and just leaves us there. I calm down and on the road we go. [After I thought about it, I told Mom, she would have really helped the cause if she could have managed to throw up. ] If he had seen us 20 minutes earlier, we had pulled over to clean up a horrible milkshake accident. What a day... But it was a beautiful drive, the flowers are blooming and Jordan Lake is beautiful.
We end up at Mom's house, pick up a couple of things [PS.. Thanks Ana for the outfit. That is the trick for Mom.] Talked with Mom's next door neighbors for a minute and we are back on the road. We managed to meet Ana on the sidewalk in High Point for a few minutes before we went to see George. When we get to George's office, Susan is also there. Mom and her got to visit for a while before Mom's appointment and also while Mom was getting watered after her appointment. It was really nice to see her. Mom has lost another 1.5 lbs since last week. She is now 168.5
Mom had a couple of liters of fluid at George's office and then we headed back home around 5:00 PM. From High Point to Fuquay - 610 to 62 to 421 to 64 to 55 . We made it back in time to see Zach hit (we watched from the car) and then we went home. Medicine, change into the PJ's, they delivered Mom's IV supplies (believe or not at 8:30 PM) and then Mom goes to bed.
Thanks everyone for the cards for Mom (Ron, Mr Hunter, Kathy and Gail.) - If I leave you out, it isn't intentional. Donnie and Wanda - Thank's for getting Mom's house ready for Ana. That was a tremendous help.
Thursday looks busy for us. Mom's port access gets changed, PT, more phone calls that I can count right now, and tons of laundry.
I woke up this morning and did a little work before Mom woke up. She woke up about 7:30 and moved to the couch. She had a couple of Toaster Strudel (her new favorite thing) and I made some phone calls. I talked w/Susan again this morning and she pointed me in a couple of different directions for Hospice. I talked with Mom's BC caseworker about this and she may have an idea about the Ensure. She left a message while we were on the road. I also talked w/my Dr's office to see if they were accepting patients and if they would take Mom as a new patient. [Yes - Plus I can swing by and pick up the paperwork and drop it off beforehand - Mom has an appointment next Tuesday to meet Jason before we need him for anything. Problem that is if Mom has a cold or something like that, we needed someone to call.]
I jumped in the shower, Mom got dressed and we stopped by Leapin' Lizards for a frozen drink for the road. If you don't know where I live, to get from Fuquay to Mom's, I go 55 to 64 to 421 to the 40/85 Bypass and then jump on Bryan Blvd. It is about 85 miles from my doorstep to her doorstep. Well, Mom and I are talking about Hospice, I am not paying attention and I GET A SPEEDING TICKET. (70 in a 55). I didn't argue, I had no idea how fast I was going. [I have a big old Volvo Station Wagon. 15 mph and 90 mph feel the exact same. ] I have never had a speeding ticket before.. I am crying, Mom is over there telling him we are going to the Chemo Dr, my hands are shaking, I can't get my driver's license out... I get the ticket and I just sit there and cry for a couple of minutes. The Highway Patrol guy pulls out and just leaves us there. I calm down and on the road we go. [After I thought about it, I told Mom, she would have really helped the cause if she could have managed to throw up. ] If he had seen us 20 minutes earlier, we had pulled over to clean up a horrible milkshake accident. What a day... But it was a beautiful drive, the flowers are blooming and Jordan Lake is beautiful.
We end up at Mom's house, pick up a couple of things [PS.. Thanks Ana for the outfit. That is the trick for Mom.] Talked with Mom's next door neighbors for a minute and we are back on the road. We managed to meet Ana on the sidewalk in High Point for a few minutes before we went to see George. When we get to George's office, Susan is also there. Mom and her got to visit for a while before Mom's appointment and also while Mom was getting watered after her appointment. It was really nice to see her. Mom has lost another 1.5 lbs since last week. She is now 168.5
Mom had a couple of liters of fluid at George's office and then we headed back home around 5:00 PM. From High Point to Fuquay - 610 to 62 to 421 to 64 to 55 . We made it back in time to see Zach hit (we watched from the car) and then we went home. Medicine, change into the PJ's, they delivered Mom's IV supplies (believe or not at 8:30 PM) and then Mom goes to bed.
Thanks everyone for the cards for Mom (Ron, Mr Hunter, Kathy and Gail.) - If I leave you out, it isn't intentional. Donnie and Wanda - Thank's for getting Mom's house ready for Ana. That was a tremendous help.
Thursday looks busy for us. Mom's port access gets changed, PT, more phone calls that I can count right now, and tons of laundry.
Tuesday, April 8, 2008
Road Trip
The blood work is back. Mom's tumor marker has doubled in the past few weeks. I talked with George late this afternoon. George will do a referral to hospice as soon as we figure out which one in the area. The last type of chemo was the last option for Mom's type of cancer. Gall Bladder cancer is very rare (3221 cases diagnosed in 2004. To put this in perspective, 186,772 cases of Breast Cancer and 1,325,199 total cases of cancer were diagnosed for all sites during this year.) and there are very few types of chemo that have been found effective for later stages of this cancer.
We are still coming up and back to Greensboro in the afternoon to see George. Mom wants to talk to him about hospice. Wendy and I will both be here. We need to understand more of how and what and why.
I told Mom after I talked with George this afternoon. We talked about this a little. Mom moved to the big bed and then we talked about this some more. I can't comprehend what this means, so I can't imagine what is going on in her head. I am not sure it is real to her right now. But, she went to sleep a little while ago and wasn't in pain today, so maybe tonight will be okay.
As far as today, Mom had fluids and ate a bunch of junk food. [Toaster strudel, Chicken Sandwiches, Cookies]. We had really good food in the fridge but Mom wanted junk food. She could eat Ice Cream Breakfast, Lunch, Dinner and Snack and I would be happy. I just want her to keep eating.
My minister dropped by today to see Mom and they had a good visit.
We took a bath today, but that loses top billing with the rest of the day.
Susan, from the last post, came by today and was very helpful. She said to call us back after we received the blood work and she would point us in the right direction. She gave me a couple of resources for Ensure (I am always trying to find the cheapest version of this in a can that Mom will drink. This stuff is right up there with gold prices. If Mom doesn't eat, she can drink 5 of the Ensure Plus and get enough nutrition for the day. Not enough fluid, but enough protein and energy for the day. But, this stuff is not covered under any type of insurance and the cheapest version works out to about 1.25/can. We are trying some things like Carnation Instant Breakfast w/whole milk and protein power but Mom is all about it being in a can. ) and a caregiver support group. Will call Susan back on Thursday and let her know what is going on and get her to help us get started. [On a side note, BC still did not approve this visit, but she was here anyway and told us not to worry, that they would eat this visit after she talked with the guys in her office this morning.]
I can't say enough about everyone that has taken care of Mom that have helped us get this far. Both George and Kelly have been wonderful. (and everyone in his group including Pat, the guys in the lab room and the people that help at the door). I have called them more than I have called my son at camp, and they have always been patient and kind. The wonderful nurses in the chemo room and upstairs have been gentle and caring. Richard, Lois, Tammy, Suzanne, Susan w/Big Wake have been absolutely supportive and gentle and more than wonderful. I want everyone to know how less horrible this has been because of all of these people. George said it best when he was talking to Wendy and I in the hall one day upstairs... "I like you guys, but I love your Mom."
We are still coming up and back to Greensboro in the afternoon to see George. Mom wants to talk to him about hospice. Wendy and I will both be here. We need to understand more of how and what and why.
I told Mom after I talked with George this afternoon. We talked about this a little. Mom moved to the big bed and then we talked about this some more. I can't comprehend what this means, so I can't imagine what is going on in her head. I am not sure it is real to her right now. But, she went to sleep a little while ago and wasn't in pain today, so maybe tonight will be okay.
As far as today, Mom had fluids and ate a bunch of junk food. [Toaster strudel, Chicken Sandwiches, Cookies]. We had really good food in the fridge but Mom wanted junk food. She could eat Ice Cream Breakfast, Lunch, Dinner and Snack and I would be happy. I just want her to keep eating.
My minister dropped by today to see Mom and they had a good visit.
We took a bath today, but that loses top billing with the rest of the day.
Susan, from the last post, came by today and was very helpful. She said to call us back after we received the blood work and she would point us in the right direction. She gave me a couple of resources for Ensure (I am always trying to find the cheapest version of this in a can that Mom will drink. This stuff is right up there with gold prices. If Mom doesn't eat, she can drink 5 of the Ensure Plus and get enough nutrition for the day. Not enough fluid, but enough protein and energy for the day. But, this stuff is not covered under any type of insurance and the cheapest version works out to about 1.25/can. We are trying some things like Carnation Instant Breakfast w/whole milk and protein power but Mom is all about it being in a can. ) and a caregiver support group. Will call Susan back on Thursday and let her know what is going on and get her to help us get started. [On a side note, BC still did not approve this visit, but she was here anyway and told us not to worry, that they would eat this visit after she talked with the guys in her office this morning.]
I can't say enough about everyone that has taken care of Mom that have helped us get this far. Both George and Kelly have been wonderful. (and everyone in his group including Pat, the guys in the lab room and the people that help at the door). I have called them more than I have called my son at camp, and they have always been patient and kind. The wonderful nurses in the chemo room and upstairs have been gentle and caring. Richard, Lois, Tammy, Suzanne, Susan w/Big Wake have been absolutely supportive and gentle and more than wonderful. I want everyone to know how less horrible this has been because of all of these people. George said it best when he was talking to Wendy and I in the hall one day upstairs... "I like you guys, but I love your Mom."
Monday, April 7, 2008
Ecclesiastes
To every thing there is a season -
I looked at the calendar today and it is April. In some ways, I feel like time has stopped, and in other ways, the days end too quickly.
We haven't heard from the blood work. I called the office again today. I want the days to hurry so we can know, but then I want them to stop forever.
I want my old Mommy back. Mom has spent more time sleeping now and is having some pain. She is still eating and drinking, but not enough to stay hydrated without the fluids. She is moving around the house and doing PT, but she is unsteady. I lay beside her some nights just to hear her breathe.
I want to thank Bonnie for the soup and Pimento Cheese and Judy for the muffins today. I just can't say thank you enough.
I spoke with Susan tonight. Richard the PT guy started this for us. She is a Social Worker with Big Wake. BC denied this referral, but she called us anyway to see if she could help. She is going to try and push this through again in the morning. Keep your fingers crossed. I told her I had $500 bucks in the bank that she was welcome to it if she would come and see Mom. Maybe I need to bill BC for Mom staying with me. Maybe they would come to their senses and see that it is more cost effective for them for Mom to stay with me and they need to send us whatever we need. Stupid-head insurance.
I looked at the calendar today and it is April. In some ways, I feel like time has stopped, and in other ways, the days end too quickly.
We haven't heard from the blood work. I called the office again today. I want the days to hurry so we can know, but then I want them to stop forever.
I want my old Mommy back. Mom has spent more time sleeping now and is having some pain. She is still eating and drinking, but not enough to stay hydrated without the fluids. She is moving around the house and doing PT, but she is unsteady. I lay beside her some nights just to hear her breathe.
I want to thank Bonnie for the soup and Pimento Cheese and Judy for the muffins today. I just can't say thank you enough.
I spoke with Susan tonight. Richard the PT guy started this for us. She is a Social Worker with Big Wake. BC denied this referral, but she called us anyway to see if she could help. She is going to try and push this through again in the morning. Keep your fingers crossed. I told her I had $500 bucks in the bank that she was welcome to it if she would come and see Mom. Maybe I need to bill BC for Mom staying with me. Maybe they would come to their senses and see that it is more cost effective for them for Mom to stay with me and they need to send us whatever we need. Stupid-head insurance.
Sunday, April 6, 2008
Tentative Schedule for this Week
Please feel free to stick comments all over the place or just email us. I will read them to Mom. It looks like Mom's email address [her old yahoo account] is now inactive. Also, feel free to call. Our best time right now seems to be between about 5-7:30 PM most nights. We don't know when PT or the IV nurse will come until that morning so our day moves to their schedule. Right now, we look like:
Monday: PT, Fluids
Tuesday: Fluids
Wednesday: Appt w/George - Rest of the week may move based on this appt. May have them water Mom while we are there.
Thursday: Port Access, Fluids
Friday: PT, Fluids
Monday: PT, Fluids
Tuesday: Fluids
Wednesday: Appt w/George - Rest of the week may move based on this appt. May have them water Mom while we are there.
Thursday: Port Access, Fluids
Friday: PT, Fluids
Some Assembly Required
Slow Sunday. Mom didn't wake up until about 9:00 AM. We had another 4 egg breakfast. Mom hung out in the bed this morning and I ran to work, grocery store and the tanning bed. (This is the only 15 minutes during the day that I have that I am still and quiet). Stan and Zach were at home with Mom. Moved Mom to the living room about 1:00 and she ate a light lunch. Some cottage cheese/pineapple and a couple of graham crackers with peanut butter. She had a snack around 4:00 (the very end of the cherry blizzard). Lane brought us lasagna and all the fixing for supper. [Thanks Lane!] and we ate some of that. Mom was in some pain today so she took another med for breakthru pain. When we go back to George on Wednesday, will ask about increasing her normal pain medicine dosages. She is actually on the same drug for both pain control and breakthru pain. The dosage she takes each morning/night is an extended release version of this drug. The breakthru pain version is an immediate release formulation, which starts to help w/n 15-30 minutes with peak concentration at 1 hr and clears her system in 4-6 hours. [This is what I learned yesterday.] Fluids today. We keep having good intentions about a bath. Maybe Monday is the day. Mom needs to rest Tuesday for the ride Wednesday. I don't want to tire her out on Tuesday.
We are moving stuff around to move Mom into Zach's room. We live in an old house with old closets. I put together another couple of clothes racks today to help shuffle stuff around. On the good side, I cleaned out my closet. On the bad side, I would have been better off starting the week with a little more mess and a little more rest.
I am going to touch base with George on Monday to see if the blood work is back.
We are moving stuff around to move Mom into Zach's room. We live in an old house with old closets. I put together another couple of clothes racks today to help shuffle stuff around. On the good side, I cleaned out my closet. On the bad side, I would have been better off starting the week with a little more mess and a little more rest.
I am going to touch base with George on Monday to see if the blood work is back.
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