This will probably be my last posting on this blog. We held visitation and a memorial service for Mom last Friday evening at the Union Hill Baptist Church in Holts Summit. Greeting the visitors was a memory table displaying several momentos from Mom's life. Her sister, Margie, put together a beautiful memory board of pictures of Mom. The memorial service was beautiful. Brother Frank Whitney and Mom's brother, Rev. Al Pulis, comforted the family and friends. Mom's friend from church, Leona Wilson, eulogized Mom. It was a very heart-felt message. Saturday, we held visitation and funeral services in Shelbina. The service included eulogies by Mom's youngest daughter, Dodo, and her good friend, Stacey. Mom's brother, Al, and his son and Mom's nephew, Stephen, spoke about Mom's past and her future with God. The ceremony was more a celebration of life than a mourning of the dead. At the gravesite, her grandchildren and great-grandchildren released pink and white balloons while telling Grandma goodbye. Mom was buried next to her middle child, Diane, who was killed by an underaged drunk driver in 1998.
We received so many cards, phone calls, donations to the ABLE program at the local library and many beautiful flowers and plants. Thanks to each and everyone of you for keeping us in your prayers during this most difficult time.
We now face the task of going through Mom's possessions and determining who she would want to have what to remember her by. So far, we have come across some very thought invoking items. She had a book she bought when she was 7. Almost every year, around her birthdate, she was written her name in it. The last time was last year when she turned 71. I was the lucky one to receive that book. We still have lots of boxes to go through, but we are enjoying each of them because they allow us to reminisce even more about Mom.
Thanks for allowing me to blog about my mother's short battle with pancreatic cancer. It has helped me get to know Mom's friends and to now count you as my friends.
Monday, December 1, 2008
Tuesday, November 25, 2008
Tuesday, November 25, 2008
I regret having to tell you Mom passed away Monday night at 11:15 p.m. She fought a very short but very courageous battle. Her sons and daughters, as well as numerous other family members and friends, were with her. We prayed and sang to help her on her journey. She still probably sharing all of the messages we gave her for our loved ones who went before her.
Her complete obituary is in tonight's Jefferson City News Tribune.
I hope to post more in a few days. Please have a safe and enjoyable Thanksgiving with your loved ones. That would have been Mom's wish for us all.
Her complete obituary is in tonight's Jefferson City News Tribune.
I hope to post more in a few days. Please have a safe and enjoyable Thanksgiving with your loved ones. That would have been Mom's wish for us all.
Sunday, November 23, 2008
Sunday, November 23, 2008
The posting today is by far the hardest one I have done. On Thursday we met with the oncologist. As I said earlier, the news was not what we had hoped for. The cancer has spread to Mom's liver and the tumor is growing and moving rapidly. He explained that the tumor is shrinking the size of her stomach. This in turn has adversely impacted her appetite. We discussed the option of a feeding tube but her physical condition contraindicated surgery at this point. The oncologist also told us that nutrition given via the IV would only feed the cancer.
Chemotherapy, at this point, is not an option, again because of her poor physical condition. Applying the Eastern Cooperative Oncology Group scale used to determine the appropriateness for chemotherapy, Mom's rating is a 4 on a scale of 1 to 4 with 4 being the worst. The scale guages the performance status of a patient's overall function. This scale helps to predict response to treatment. Patients with poor performance status are unlikely to derive significant benefit from systemic chemotherapy. A rating of 4 indicates she is unable to care for herself and severely disabled.
Based on our conference with the oncologist, mom's wishes and family discussion, we made the tough decision to begin providing palliative care only. The goal of palliative care is to provide comfort care and pain relief only. At this time, Mom will remain in the hospital.
Her visitors Saturday were Okey, Roxie, Dodo, Bryon, Kevin, Stacey, Lacy, Erick, Andy, Ronnie, Robin, Ashley, Emily, Dylan, Gabe, Gina, Mike, Dea, Dale, Karen, Jan, and Shirley. The time together gave us another opportunity to reminisce about Mom. We tried to define THE LOOK. The definitions range from "How stupid do you think I am?; Are you really that stupid?; Did you really just do that?; Did you really just say that to me?; and I never did anything like that in my life, regardless of what you say or believe."
During the emergency department visit Tuesday morning, the physician who examined Mom came back in the room to check on her. He asked if everything was OK and did we need anything to which Mom replied, "No, we're just sitting here planning my funeral." The doctor got a look of shock on his face and look to me to see if Mom was confused or not. I said, "She's right; that's what we're doing." Looking back now, I'm thankful we had that time together. There were several things I did not know about Mom's preferences. Being able to hear them directly from her, I was able to seek clarification and not have to resolve questions on my own. There were several humorous moments; some questionable moments; and some really touching moments. When we finished there was very few questions left for the family to answer. Sadly, those we will have to answer on our own in a few days.
The hospital staff remains committed to making our time here as comfortable as possible. They have anticipated most of our needs, and have been very understanding when we have been somewhat demanding.
Yesterday, I asked for the readers to send me memorable moments with Mom. Here are two I received:
Another friend wrote:
Chemotherapy, at this point, is not an option, again because of her poor physical condition. Applying the Eastern Cooperative Oncology Group scale used to determine the appropriateness for chemotherapy, Mom's rating is a 4 on a scale of 1 to 4 with 4 being the worst. The scale guages the performance status of a patient's overall function. This scale helps to predict response to treatment. Patients with poor performance status are unlikely to derive significant benefit from systemic chemotherapy. A rating of 4 indicates she is unable to care for herself and severely disabled.
Based on our conference with the oncologist, mom's wishes and family discussion, we made the tough decision to begin providing palliative care only. The goal of palliative care is to provide comfort care and pain relief only. At this time, Mom will remain in the hospital.
Her visitors Saturday were Okey, Roxie, Dodo, Bryon, Kevin, Stacey, Lacy, Erick, Andy, Ronnie, Robin, Ashley, Emily, Dylan, Gabe, Gina, Mike, Dea, Dale, Karen, Jan, and Shirley. The time together gave us another opportunity to reminisce about Mom. We tried to define THE LOOK. The definitions range from "How stupid do you think I am?; Are you really that stupid?; Did you really just do that?; Did you really just say that to me?; and I never did anything like that in my life, regardless of what you say or believe."
During the emergency department visit Tuesday morning, the physician who examined Mom came back in the room to check on her. He asked if everything was OK and did we need anything to which Mom replied, "No, we're just sitting here planning my funeral." The doctor got a look of shock on his face and look to me to see if Mom was confused or not. I said, "She's right; that's what we're doing." Looking back now, I'm thankful we had that time together. There were several things I did not know about Mom's preferences. Being able to hear them directly from her, I was able to seek clarification and not have to resolve questions on my own. There were several humorous moments; some questionable moments; and some really touching moments. When we finished there was very few questions left for the family to answer. Sadly, those we will have to answer on our own in a few days.
The hospital staff remains committed to making our time here as comfortable as possible. They have anticipated most of our needs, and have been very understanding when we have been somewhat demanding.
Yesterday, I asked for the readers to send me memorable moments with Mom. Here are two I received:
The rest of the story is that based on that conversation, Mom discovered her maternal grandfather was still alive. She had not seen him for 40+ years and assumed that based on his age which would have been at least 100 years old, that he surely had passed on. Mary Jo shared with Mom that in fact he was alive and kicking in Tampa, Florida. Mom and I promptly bought our plane tickets and flew to see him. It was quite a reunion. We met his wife, a former ballerina from Austria who was 40 years younger than him. And Mom was right, he was 101 years old. Unfortunately, he passed away the following year.Hi Lori,
So sorry all your family and friends are seeing Carol suffer so. Pray that God will take her by the hand and no more suffering and pain.
One my best moments was when Carol and I found each other after so many years. I remember the call I made to her--Said "Claudine you better sit down, this is your cousin Mary Jo", well sure you know the story that she thought I had died. Loved all the time we had together, going to Branson was just great.
Would love to make her my coffee cake she loved so much. I have a vase that I bought for one her birthdays, as she liked grapes so much, well I was always going to take it to her. Didn't dare send it. Life is short, we're not promised tomorrow!!
So sorry all your friends and family are seeing her suffer so, know what you are going through. Just pray God will be with all of you. Taking Brandi to see her was great. You all sound like a loving family.
God bless.
Carol's cousin Mary Jo
Another friend wrote:
I read your comments on the Blog and to me they were just ‘your family’. Lori, I have told so many people about Ronnie’s funeral. Your family does not have a funeral, you have a get-together and share the good memories you have had. I love that idea, but as you say that was because your mother instilled it in you from a time in your life when you were young.
You are doing so much for her now and I know she appreciates it as she has told me on the phone when we talked each afternoon for awhile these past few weeks. One afternoon we talked for over a half hour. It was so interesting, just sharing memories.
In re-doing my office I have several bulletin boards which I put ‘family’ pictures on, BUT one is for my friends and I. I have 2 of Carol and I at different places and time. The one that brings back the most memories is one that was taken in Old St. Charles, around 2004. I had never been down there and it was so much fun and so interesting when she took me. She had been to that area before and knew the history of the town. I did not know it was the first Capital of Missouri until we visited the building where the lawmakers worked. I loved that time. I just wish we had of had more of them together.
We were to go to Branson this fall, but when she came back early from her last trip down and then did not go to Margie’s Son’s wedding, I knew she was not feeling well.
Carol’s Longtime Friend,
Lenora
Thanks to Mary Jo and Lenora for taking the time to share these memories with us. I will post more as I receive them.
Saturday, November 22, 2008
Saturday, November 22, 2008
First, I want to thank Cissy for the memories she shared in her comments yesterday. I remember Mom telling us about that weekend. She really did enjoy it.
Her granddaughter Gina stayed with her last night. At least one of us are staying with Mom at all times.
Well, Brandi (the cat) came to visit Mom last night. Of course a little nervous at first, but she warmed up fast. You could tell that she wanted to climb all over Mom, but the weight was a little too much for her to handle. Stacey got a few photos of Mom and Brandi together. By the end of the visit the cat had made herself at home on the end of Mom's bed. It was truly a memorable reunion.
The hospitality by the staff at the hospital has been the best. Yesterday they brought in a cart of cookies, tea, and coffee for the family and visitors. Also, the nurse assigned to Mom yesterday morning was not a nurse who routinely worked the oncology unit. When the hospital saw that we were struggling with her inexperience, they promptly replaced her with a nurse who volunteered to be Mom's nurse. They also have a masseuse who comes in every night and offers Mom a massage. The masseuse also offers one to family members in the room when she's done with Mom's.
Mom's pain medicine has been increased to ease her pain as much as possible and to make her comfortable. Unfortunately, this causes her to sleep most of the day. When she is awake, we make the most of the time to let her know we are here and that we love her.
She had a multitude of visitors yesterday. Her visitors yesterday were me, Dodo, Okey, Roxie, Kevin, Margie, David, Gina, Mike, Jaime, Ronnie, Robin, Emily, Dylan, Gabe, Ashley, Byron, Skyler, Erick, and Lacy. The nursing staff have commented on how great it is to see a family as close and as caring as ours. One nurse said, "We don't see that as much as we wish we could."
We spent a lot of time reminiscing about Mom. Her legacy truly was teaching her family the importance of family. The other day she was telling someone that she and her oldest son had celebrated Christmas together for the first 36 years of his life. While we know our time to share future celebrations with Mom physically is coming to an end, we have no doubt that she will always be there spiritually. And it is she who will continue to draw the family together for fun and laughter several times a year.
I think Mom recorded every family get-together with pictures. Mom would grab one or more family members (especially the young ones), hand someone her camera and say, "Here, take a picture." And with all of those pictures, she has created an album for each son and daughter of pictures she believes will be important to them.
Mom and I took many trips together. The one that comes to mind most frequently is our cruise to Alaska. We cruised the inner passage, flew from Anchorage to Prudoe Bay, motorcoached 500 miles from Prudoe Bay to Fairbanks and then flew home. I know we must have taken 150 rolls of film between the two of us. The last night of the cruise was the Captain's dinner. They were serving lobster and we had been looking forward to dressing up this night the entire cruise. This was also the day we hit some very strong waves. The water in the swimming pool on the deck was splashing over the sides. Because of this, I became very seasick. The onboard doctor gave me a shot for the nausea which caused me to sleep and miss the dinner. When I woke up the next morning, I discovered Mom had stayed with me in the cabin and did not attend the dinner.
We reminisced about Mom's driving and how many times the side view mirror on the caddy was replaced or repaired. We talked about the look - you know THE LOOK - she would give us when she did not think something we said or did was funny. We all got THE LOOK, some of us more often than others.
The grandkids have reminisced about the weekends with Grandma Cupcake at Camp August on the Osage River and the mudslide and the tubing and the pontoon boat rides. They say these times are some of the best ones of their childhood.
If you have memories you would like to share about Mom, please enter them in the comment section or email them to me and I will post them for you. We would love to hear them.
Her granddaughter Gina stayed with her last night. At least one of us are staying with Mom at all times.
Well, Brandi (the cat) came to visit Mom last night. Of course a little nervous at first, but she warmed up fast. You could tell that she wanted to climb all over Mom, but the weight was a little too much for her to handle. Stacey got a few photos of Mom and Brandi together. By the end of the visit the cat had made herself at home on the end of Mom's bed. It was truly a memorable reunion.
The hospitality by the staff at the hospital has been the best. Yesterday they brought in a cart of cookies, tea, and coffee for the family and visitors. Also, the nurse assigned to Mom yesterday morning was not a nurse who routinely worked the oncology unit. When the hospital saw that we were struggling with her inexperience, they promptly replaced her with a nurse who volunteered to be Mom's nurse. They also have a masseuse who comes in every night and offers Mom a massage. The masseuse also offers one to family members in the room when she's done with Mom's.
Mom's pain medicine has been increased to ease her pain as much as possible and to make her comfortable. Unfortunately, this causes her to sleep most of the day. When she is awake, we make the most of the time to let her know we are here and that we love her.
She had a multitude of visitors yesterday. Her visitors yesterday were me, Dodo, Okey, Roxie, Kevin, Margie, David, Gina, Mike, Jaime, Ronnie, Robin, Emily, Dylan, Gabe, Ashley, Byron, Skyler, Erick, and Lacy. The nursing staff have commented on how great it is to see a family as close and as caring as ours. One nurse said, "We don't see that as much as we wish we could."
We spent a lot of time reminiscing about Mom. Her legacy truly was teaching her family the importance of family. The other day she was telling someone that she and her oldest son had celebrated Christmas together for the first 36 years of his life. While we know our time to share future celebrations with Mom physically is coming to an end, we have no doubt that she will always be there spiritually. And it is she who will continue to draw the family together for fun and laughter several times a year.
I think Mom recorded every family get-together with pictures. Mom would grab one or more family members (especially the young ones), hand someone her camera and say, "Here, take a picture." And with all of those pictures, she has created an album for each son and daughter of pictures she believes will be important to them.
Mom and I took many trips together. The one that comes to mind most frequently is our cruise to Alaska. We cruised the inner passage, flew from Anchorage to Prudoe Bay, motorcoached 500 miles from Prudoe Bay to Fairbanks and then flew home. I know we must have taken 150 rolls of film between the two of us. The last night of the cruise was the Captain's dinner. They were serving lobster and we had been looking forward to dressing up this night the entire cruise. This was also the day we hit some very strong waves. The water in the swimming pool on the deck was splashing over the sides. Because of this, I became very seasick. The onboard doctor gave me a shot for the nausea which caused me to sleep and miss the dinner. When I woke up the next morning, I discovered Mom had stayed with me in the cabin and did not attend the dinner.
We reminisced about Mom's driving and how many times the side view mirror on the caddy was replaced or repaired. We talked about the look - you know THE LOOK - she would give us when she did not think something we said or did was funny. We all got THE LOOK, some of us more often than others.
The grandkids have reminisced about the weekends with Grandma Cupcake at Camp August on the Osage River and the mudslide and the tubing and the pontoon boat rides. They say these times are some of the best ones of their childhood.
If you have memories you would like to share about Mom, please enter them in the comment section or email them to me and I will post them for you. We would love to hear them.
Friday, November 21, 2008
Friday, November 21, 2008
I'm posting again from Mom's hospital room. She seems be able to handle the pain until they move her. She in then in quite a bit of pain, as she describes "she wants to scream."
We spent the morning with Mom going through her keepsake box. She had kept her first born's diaper pin, her mother's swimming awards, her father's hand tooled billfold and many other mementos. She had several strings of pearls of her grandmother's, mother's and hers. It was fun to reminisce with her.
She's excited that Brandi will be get to come visit her this evening. That visit should do a lot to raise her spirits.
I received this prayer this morning:
Mom is sleeping right now.
We spent the morning with Mom going through her keepsake box. She had kept her first born's diaper pin, her mother's swimming awards, her father's hand tooled billfold and many other mementos. She had several strings of pearls of her grandmother's, mother's and hers. It was fun to reminisce with her.
She's excited that Brandi will be get to come visit her this evening. That visit should do a lot to raise her spirits.
I received this prayer this morning:
Dear God: This lady, Carol, is beautiful, classy and had always been strong, and WE love her. You have helped her live her life to the fullest. You have helped her shine in the dark and hard places of her life.Protect her and lift her up now when she needs you the most. Let her know YOU are walking with her and she will always be safe. You promised YOU would never leave her. YOU are carrying her in Your arms. Thank You, Lord.
Prayer from Al & Marilyn
Mom is sleeping right now.
Thursday, November 20, 2008
Thursday, November 20, 2008
I'm posting this from Mom's hospital room tonight. She is resting quietly at the present. She has had a lot of visitors today. Three of her close friends, Stacey, Cyndy and Dea; two of her grandchildren; and one great-grandchild stopped by. She enjoyed seeing Rich and Cyndy's pictures from their recent trip to Italy. It brought back of lot of good memories of her travels around the world. Her sister and brother-in-law, Margie and David, and Dodo and I have been here most of the day.
She was fairly alert earlier in the day, but not as much so this evening. Her pain doesn't seem to be as bad today, but they have also increased the strength of her pain medicine.
Dodo, Stacey and I met with her oncologist late this afternoon. The news was not what we had hoped for. We would ask that you continue to pray for Mom. I received a prayer from Carol T. "Please, Lord. Don't allow her to suffer. Please take away her pain as You wrap Your arms around her and take her to a better place. That is my prayer for your mother as well."
We truly appreciate the caring comments you leave for us and the kind emails I have received over the past few weeks. They have made this blog so much more meaningful.
She was fairly alert earlier in the day, but not as much so this evening. Her pain doesn't seem to be as bad today, but they have also increased the strength of her pain medicine.
Dodo, Stacey and I met with her oncologist late this afternoon. The news was not what we had hoped for. We would ask that you continue to pray for Mom. I received a prayer from Carol T. "Please, Lord. Don't allow her to suffer. Please take away her pain as You wrap Your arms around her and take her to a better place. That is my prayer for your mother as well."
We truly appreciate the caring comments you leave for us and the kind emails I have received over the past few weeks. They have made this blog so much more meaningful.
Thursday, November 20, 2008
I apologize for not posting yesterday. And I really don't want to do this post.
Mom appears to be declining rapidly. She is receiving pain medication which helps some of the time. The doctor also ordered Ativan to be given to relax her muscles in an effort to ease the pain. It seemed to be helping her somewhat. She is still not eating and she is too weak to get out of bed at all.
There were several family members with her yesterday evening. Dodo spent the night in order to visit with the oncologist when he made his rounds about 3 this morning. He examined Mom, tried to ask her a few questions to which she was basically nonresponsive or responded incorrectly. He then said he would like to consult with the family this afternoon. We will be meeting in his office at 2:00. I have no idea what his thoughts are at this time. And I certainly don't want to surmise what they might be.
We are headed to the hospital this morning to see how Mom is doing. I will post a brief note as soon as we know.
Again, please keep Mom in your prayers and ask the Lord to help ease her pain and suffering.
Mom appears to be declining rapidly. She is receiving pain medication which helps some of the time. The doctor also ordered Ativan to be given to relax her muscles in an effort to ease the pain. It seemed to be helping her somewhat. She is still not eating and she is too weak to get out of bed at all.
There were several family members with her yesterday evening. Dodo spent the night in order to visit with the oncologist when he made his rounds about 3 this morning. He examined Mom, tried to ask her a few questions to which she was basically nonresponsive or responded incorrectly. He then said he would like to consult with the family this afternoon. We will be meeting in his office at 2:00. I have no idea what his thoughts are at this time. And I certainly don't want to surmise what they might be.
We are headed to the hospital this morning to see how Mom is doing. I will post a brief note as soon as we know.
Again, please keep Mom in your prayers and ask the Lord to help ease her pain and suffering.
Tuesday, November 18, 2008
Tuesday, November 18, 2008
I took Mom to the ER this morning around 7:30. They immediately started an IV, first with a bolus and then they slowed the rate to 250 ccs an hour (which is still fairly fast) - Normally an IV rate will be 75 to 100 ccs an hour. A bolus is when they infuse a large amount of fluids for the purpose of rapidly achieving the needed therapeutic results.
They also gave her Dilaudid for pain and Zofran for her nausea. She was feeling a little bit better but was still in quite a bit of pain. Her pain started out at a 9 on a scale of 1-10 (with 10 being the worst pain ever) and it was a 7 when I left about 3:oo this afternoon. It will take them a while to get it back to a somewhat comfortable level.
The blood tests they did in the ER showed most were within normal levels. They tested her liver and pancreas enzymes to see if they were elevated which would have been indicative of the stent being blocked. There was a slight elevation in her bilirubin level but nothing to be overly concerned about. An elevated bilirubin level indicates the liver is not removing bile due to a possible blockage. It can also be caused by other factors, such as is in newborns who are jaundiced.
She made it up to her room around 1:00. The doctor ordered an ultrasound to see if her stent was blocked again. Because of her condition, they did the US in her room rather than taking her to the US lab. The US was completed before I left; however, I don't know what the results were.
I know she was really tired when I left. The US was fairly painful as they had to press on her abdomen to get clear pictures.
Her oncologist will be in tomorrow morning (usually between 3 and 4 in the morning). I'm not sure what he will order her plan of care and treatment to be. Mom is suppose to discuss the possibility of a feeding tube. If she doesn't, I will be at the hospital Thursday morning around 3.
Several of you have asked about Dodo. She is planning on coming to be with Mom tomorrow. I look forward to having her here. She's a great support.
They also gave her Dilaudid for pain and Zofran for her nausea. She was feeling a little bit better but was still in quite a bit of pain. Her pain started out at a 9 on a scale of 1-10 (with 10 being the worst pain ever) and it was a 7 when I left about 3:oo this afternoon. It will take them a while to get it back to a somewhat comfortable level.
The blood tests they did in the ER showed most were within normal levels. They tested her liver and pancreas enzymes to see if they were elevated which would have been indicative of the stent being blocked. There was a slight elevation in her bilirubin level but nothing to be overly concerned about. An elevated bilirubin level indicates the liver is not removing bile due to a possible blockage. It can also be caused by other factors, such as is in newborns who are jaundiced.
She made it up to her room around 1:00. The doctor ordered an ultrasound to see if her stent was blocked again. Because of her condition, they did the US in her room rather than taking her to the US lab. The US was completed before I left; however, I don't know what the results were.
I know she was really tired when I left. The US was fairly painful as they had to press on her abdomen to get clear pictures.
Her oncologist will be in tomorrow morning (usually between 3 and 4 in the morning). I'm not sure what he will order her plan of care and treatment to be. Mom is suppose to discuss the possibility of a feeding tube. If she doesn't, I will be at the hospital Thursday morning around 3.
Several of you have asked about Dodo. She is planning on coming to be with Mom tomorrow. I look forward to having her here. She's a great support.
Monday, November 17, 2008
Monday, November 17, 2008 - Evening
It's amazing how things can change in just a few hours. Mom will not be getting IVs at home as originally planned. Instead she will be admitted to the hospital tomorrow morning. When I explained to the home health nurse that Mom expected the IV fluids to help her get strong enough for chemotherapy, she felt we needed to talk with the oncologist again. Based on that conversation, Stacy and I approached Mom with her options. 1 - She could have the IV fluids at home, but it would not be enough to strengthen her; 2-She could have hospice come to the house to care for her and she might get stronger but that was very doubtful; 3-she could go to the hospital for IV fluids and nutrition and hope to get strong enough for chemo, but this was extremely unlikely; or 4 - she could go to the hospital for IV fluids and nutrition in order to be strong enough for placement of a feeding tube which might help her get strong enough for chemotherapy.
The oncologist will admit her. During his first visit with her in the hospital, she is to ask him what, if anything, needs to happen for her to be strong enough to get chemo and then what she needs to do to make that happen. Mom said tonight that she is not ready to give up. I told her if that was the case, then she needed to make decisions much quicker than she has been - that she can't wait until the end to decide to do something. She's headed for the edge of the cliff and if she doesn't act now, she may very well not have an opportunity to correct her course in the future.
Stacey suggested she get a laptop computer so she could stay on top of her emails. Would you believe she wants to wait until the sales the Friday after Thanksgiving? I told her I didn't think she would be strong enough by then to stand in line to buy one. She said, "Of course, I won't." At that time Stacey and I told her that we weren't going to stand in the lines either, so she best let us know now which one she wants me to buy her. Even then, she still said she wants to wait a day or two before making up her mind.
We told Mom it was hard to sit by and watch her die. That we wanted to do whatever we could for her. If she wanted to be aggressive with this cancer, then we would be aggressive with her; if she wanted to not fight it, we would try and comfort her and make her as comfortable as we could. We told her we would change course with her as often as she wanted us to, but that she needs to help us clearly know what it is she wants.
Stacey and I also talked about a lot of other things with Mom tonight. We talked about how one becomes comfortable and at peace with dying. That's not an easy conversation for a bunch of amateurs. If you can offer Mom words of wisdom, we'll be happy to pass them on. Someone shared this prayer with me:
The oncologist will admit her. During his first visit with her in the hospital, she is to ask him what, if anything, needs to happen for her to be strong enough to get chemo and then what she needs to do to make that happen. Mom said tonight that she is not ready to give up. I told her if that was the case, then she needed to make decisions much quicker than she has been - that she can't wait until the end to decide to do something. She's headed for the edge of the cliff and if she doesn't act now, she may very well not have an opportunity to correct her course in the future.
Stacey suggested she get a laptop computer so she could stay on top of her emails. Would you believe she wants to wait until the sales the Friday after Thanksgiving? I told her I didn't think she would be strong enough by then to stand in line to buy one. She said, "Of course, I won't." At that time Stacey and I told her that we weren't going to stand in the lines either, so she best let us know now which one she wants me to buy her. Even then, she still said she wants to wait a day or two before making up her mind.
We told Mom it was hard to sit by and watch her die. That we wanted to do whatever we could for her. If she wanted to be aggressive with this cancer, then we would be aggressive with her; if she wanted to not fight it, we would try and comfort her and make her as comfortable as we could. We told her we would change course with her as often as she wanted us to, but that she needs to help us clearly know what it is she wants.
Stacey and I also talked about a lot of other things with Mom tonight. We talked about how one becomes comfortable and at peace with dying. That's not an easy conversation for a bunch of amateurs. If you can offer Mom words of wisdom, we'll be happy to pass them on. Someone shared this prayer with me:
Oh, Giver of Life, please have mercy. Your sweet child, she suffers today. In her stead, Lord, I beg and beseech Thee... On her behalf I now humbly pray. In Your tender compassion and mercy, Send angels to stand guard round her bed. Let Your Spirit of Love gently surround her, That Your Presence may draw her instead.
Monday, November 17, 2008 - Late Afternoon
Mom is not doing well at all today. When I spoke with her this morning, she said she had quit taking her medicines – all of them – because they made her vomit. She told me she had a call into the oncologist and was going to tell him he had to do something about the pain. I reminded Mom that she was limiting some of the options for treatment available to her. She said she
might be interested in hospice, but she would not go to a skilled nursing facility. I know it is Stacy and ours’ wishes to grant her wishes but it becomes more difficult to see her deteriorate each day.
The home health nurse visited Mom this afternoon. She spoke with the oncologist who wants Mom to begin receiving IV fluids at home for the next 5 days. She will also receive a multivitamin in the IV. I don’t know that Mom understands the purpose of the IV fluids is to hydrate her. I don’t know what she believes the IV fluids will do for her. The nurse will be there tonight to get the IV set up and going. Stacey will care for the IV during the night. The home health nurse will visit Mom again tomorrow to draw some blood for laboratory tests.
Stacy and I hope to talk with Mom this evening in order to get a better idea of what her wishes are. She commented to Stacy that she realized chemotherapy is out of the question right now. We just don’t know if she just wants the pain to stop; just wants the nausea and vomiting to stop; just wants them both to stop so she can be comfortable; or for them both to stop so she can get
stronger and begin chemotherapy. We just don’t know. Although we are both nurses, we don’t know what her prognosis is at this time.
I would share with you that she truly looks forward to the cards. It is truly
the highlight of her day. And she shares your cards with her visitors.
might be interested in hospice, but she would not go to a skilled nursing facility. I know it is Stacy and ours’ wishes to grant her wishes but it becomes more difficult to see her deteriorate each day.
The home health nurse visited Mom this afternoon. She spoke with the oncologist who wants Mom to begin receiving IV fluids at home for the next 5 days. She will also receive a multivitamin in the IV. I don’t know that Mom understands the purpose of the IV fluids is to hydrate her. I don’t know what she believes the IV fluids will do for her. The nurse will be there tonight to get the IV set up and going. Stacey will care for the IV during the night. The home health nurse will visit Mom again tomorrow to draw some blood for laboratory tests.
Stacy and I hope to talk with Mom this evening in order to get a better idea of what her wishes are. She commented to Stacy that she realized chemotherapy is out of the question right now. We just don’t know if she just wants the pain to stop; just wants the nausea and vomiting to stop; just wants them both to stop so she can be comfortable; or for them both to stop so she can get
stronger and begin chemotherapy. We just don’t know. Although we are both nurses, we don’t know what her prognosis is at this time.
I would share with you that she truly looks forward to the cards. It is truly
the highlight of her day. And she shares your cards with her visitors.
Sunday, November 16, 2008 - Evening
Tonight's post is from an email I received from mom's friend Stacey.
Today was a so so day; she wasn't able to stay up very long when the family was here. She's complained of a lot of stomach pain today.
It was a tear jerker when Kevin (Mom's best friend's son) was telling her good-bye. She told him with a quivering voice that she only had months at most.....Hearing them say their good-byes was heart wrenching for me.Kevin said he didn't think he had ever been in a situation to tell someone good-bye knowing it was probably going to be the last time he would see her.
What do you tell someone? How do you tell them? How do you pull yourself away?
Good-bye took on a whole new meaning for Kev today.....I cried seeing the anguish in his face. God it hurt to watch him struggle just to get in his car and drive so slowly away.......I couldn't look up....couldn't bare to see the pain as he left.......
Carol has been terribly quiet since Kevin left....I guess I would be too, heck I have been! What do I say? Isn't a word that comes to mind for me (Yeah I know that's unusual!)........
Sometimes I think seeing her everyday...watching her deteriorate nearly before my eyes is so hard.....but I think telling her good-bye would be worse for me........this way I don't have to say good-bye, not yet......
My heart aches.....for her....for her friends.....for her family.....
Carol is......well she's Carol...those who know her know what I mean (smile)....but I've known her for 18 years so I'm pretty used to her ways.......She always felt the need come off so alo0f to most things......I never really got that part but I saw through it....maybe that's why we became so close throughout the years....I knew her outward appearance wasn't all that she really was but I allowed her to be that way and would only call her on it once in awhile! Carol's abruptness would scare the hell out of some people....Me, heck I just laughed at her........
I may not be family (or maybe that sixth child!).........but I love her just the same....... So I will help her to maintain that..... lets' just call it dignity.......... because for Carol it is who she is....and who she is.....well it is who I love so much
After I read Stacey's email, I added a You Tube video to this blog. It is a performance by Celtic Woman singing "The Soft Goodbye."
Today was a so so day; she wasn't able to stay up very long when the family was here. She's complained of a lot of stomach pain today.
It was a tear jerker when Kevin (Mom's best friend's son) was telling her good-bye. She told him with a quivering voice that she only had months at most.....Hearing them say their good-byes was heart wrenching for me.Kevin said he didn't think he had ever been in a situation to tell someone good-bye knowing it was probably going to be the last time he would see her.
What do you tell someone? How do you tell them? How do you pull yourself away?
Good-bye took on a whole new meaning for Kev today.....I cried seeing the anguish in his face. God it hurt to watch him struggle just to get in his car and drive so slowly away.......I couldn't look up....couldn't bare to see the pain as he left.......
Carol has been terribly quiet since Kevin left....I guess I would be too, heck I have been! What do I say? Isn't a word that comes to mind for me (Yeah I know that's unusual!)........
Sometimes I think seeing her everyday...watching her deteriorate nearly before my eyes is so hard.....but I think telling her good-bye would be worse for me........this way I don't have to say good-bye, not yet......
My heart aches.....for her....for her friends.....for her family.....
Carol is......well she's Carol...those who know her know what I mean (smile)....but I've known her for 18 years so I'm pretty used to her ways.......She always felt the need come off so alo0f to most things......I never really got that part but I saw through it....maybe that's why we became so close throughout the years....I knew her outward appearance wasn't all that she really was but I allowed her to be that way and would only call her on it once in awhile! Carol's abruptness would scare the hell out of some people....Me, heck I just laughed at her........
I may not be family (or maybe that sixth child!).........but I love her just the same....... So I will help her to maintain that..... lets' just call it dignity.......... because for Carol it is who she is....and who she is.....well it is who I love so much
After I read Stacey's email, I added a You Tube video to this blog. It is a performance by Celtic Woman singing "The Soft Goodbye."
Sunday, November 16, 2008
Sunday, November 16, 2008
Today is Mom's oldest son's 56th birthday. He and his wife are coming to see Mom today. I have baked a cake so she can celebrate it with him.
It is also one of her grandsons' birthday.
It is also one of her grandsons' birthday.
Saturday, November 15, 2008
Saturday, November 15, 2008
When I asked Mom how she was feeling today, she said, "so so," This has become her standard reply. She evidently did better yesterday keeping her medicines down.
Stacy told me Mom did not eat anything at all yesterday. She was lying in bed when I got there this morning and had not yet had anything to eat. Also, she had not taken her pills so I'm not sure how she'll do today.
Mom's best childhood friend's son, Kevin, in visiting her for a couple of days. He lives in Oregon.
Mom's goal for the next couple of weeks is to get well enough to celebrate Thanksgiving with the family. Plans are to drive to my younger brother's home, which is about 2 hours away. Last week Mom felt she was up to the trip. Today, she didn't think she would feel like going at all. Stacy and I challenged her to make that her goal; she said she would try.
We continue to seek ways to increase Mom's appetite.
Stacy told me Mom did not eat anything at all yesterday. She was lying in bed when I got there this morning and had not yet had anything to eat. Also, she had not taken her pills so I'm not sure how she'll do today.
Mom's best childhood friend's son, Kevin, in visiting her for a couple of days. He lives in Oregon.
Mom's goal for the next couple of weeks is to get well enough to celebrate Thanksgiving with the family. Plans are to drive to my younger brother's home, which is about 2 hours away. Last week Mom felt she was up to the trip. Today, she didn't think she would feel like going at all. Stacy and I challenged her to make that her goal; she said she would try.
We continue to seek ways to increase Mom's appetite.
Friday, November 14, 2008
Friday, November 14, 2008
I was hoping this posting would be more upbeat than my last one. Mom continues to have difficulty keeping her medicines down. She seems overwhelmed by the number of pills she has to take each day. She counted them and there are 32 pills. Tonight I plan on sitting down with her to explain the purpose and importance of each one.
Mom’s appetite and oral intake remain basically nonexistent. Yesterday, she ate 6 grapes and drank maybe one can of Boost. Her caloric intake for the entire day amounted to 378 calories. Her caloric intake should be around 1150 calories a day. Right now she is only getting one-third the calories she needs. This has probably been the norm for her the past couple of months when she’s not receiving nutritional support intravenously.
Her oncologist did offer a couple of suggestions to possibly help with the nausea and vomiting. He recommends she sit up for at least 30 minutes after eating food or taking her medications. Even better, he said, would be for her to walk for 5 to 10 minutes. He also said that she should take the medication he prescribed for nausea and vomiting ½ hour before she takes her medications rather than just when she thinks she needs it.
Additionally, there are more aggressive treatments (e.g., celiac nerve block; insertion of a feeding tube) but each of those have drawbacks. It is up to Mom to decide what she wishes to do or not do. The only thing we can do is present the options to her so she can make an informed decision.
We also discussed hospice care. Mom doesn’t believe she wants hospice care at this point. My thinking is that hospice care would help her get stronger so she can better tolerate chemotherapy. Once she’s at that point we can drop the hospice care and begin treating the cancer. There are several conditions that must be met before Medicare will pay for hospice care. Basically, the patient must have a terminal illness and expected to live six months or less. Mom's oncologist said a lot of patients will refuse hospice care because they are unable to acknowledge they have a terminal illness and only months to live. To find out more about hospice care, visit the Missouri Hospice Care website.
Unfortunately, Mom also fell early this morning. Fortunately she did not have any injuries, other than her pride.
I think one of the reasons Mom is having trouble dealing with this illness is that she has never been sick. Her only hospitalizations were to have babies. She has been exceptionally healthy her whole life; therefore, she doesn’t have a reference point to go from as to how sick she really is. This might be a blessing.
Mom’s appetite and oral intake remain basically nonexistent. Yesterday, she ate 6 grapes and drank maybe one can of Boost. Her caloric intake for the entire day amounted to 378 calories. Her caloric intake should be around 1150 calories a day. Right now she is only getting one-third the calories she needs. This has probably been the norm for her the past couple of months when she’s not receiving nutritional support intravenously.
Her oncologist did offer a couple of suggestions to possibly help with the nausea and vomiting. He recommends she sit up for at least 30 minutes after eating food or taking her medications. Even better, he said, would be for her to walk for 5 to 10 minutes. He also said that she should take the medication he prescribed for nausea and vomiting ½ hour before she takes her medications rather than just when she thinks she needs it.
Additionally, there are more aggressive treatments (e.g., celiac nerve block; insertion of a feeding tube) but each of those have drawbacks. It is up to Mom to decide what she wishes to do or not do. The only thing we can do is present the options to her so she can make an informed decision.
We also discussed hospice care. Mom doesn’t believe she wants hospice care at this point. My thinking is that hospice care would help her get stronger so she can better tolerate chemotherapy. Once she’s at that point we can drop the hospice care and begin treating the cancer. There are several conditions that must be met before Medicare will pay for hospice care. Basically, the patient must have a terminal illness and expected to live six months or less. Mom's oncologist said a lot of patients will refuse hospice care because they are unable to acknowledge they have a terminal illness and only months to live. To find out more about hospice care, visit the Missouri Hospice Care website.
Unfortunately, Mom also fell early this morning. Fortunately she did not have any injuries, other than her pride.
I think one of the reasons Mom is having trouble dealing with this illness is that she has never been sick. Her only hospitalizations were to have babies. She has been exceptionally healthy her whole life; therefore, she doesn’t have a reference point to go from as to how sick she really is. This might be a blessing.
Thursday, November 13, 2008
Thursday, November 13, 2008
Well, Mom had a rough night and day. Stacy said she threw up her evening medicines yesterday and that she felt better after doing so. I doubt that she ate more than a couple of bites yesterday.
This evening when I stopped by to check on her, she said she just wasn't able to eat. She continues to feel full; the thought of eating makes her sick; and she always has a horrible taste in her mouth. She had not eaten anything today and only drank a couple of ounces of Boost. I wish there was some magic sprinkles we could put on her food to help her eat.
She also said she threw up her medicines twice today. She is taking medicine to calm her stomach, but it can't do much good if it comes right back up. I will check with her doctor to see what other routes or types of medicine might work (e.g., suppositories, tablets that quickly dissolve or injectables). Surely there is something out there.
She did say she is sleeping pretty good. Stacy said she is up several times during the night. It's hard to tell when talking with Mom if she is being truthful with us or just telling us what she knows we want to hear.
I know that at times her voice sounds fairly strong. I can assure you this is not indicative of how she looks or feels. It gets harder each day to see her waste away. I would expect her to be back in the hospital in a few days.
Home health did come by to see her today. Several of the social workers helping Mom know her from when she was the administrator at the nursing home. Their respect her for her is very evident. They assessed her living area and and have made recommendations as to what durable medical equipment she would benefit from having at the condo. Hopefully, we can get this in place tomorrow.
I'm thinking of checking out hospice services. They might be able to provide care that might help her to get strong enough to try chemotherapy. I'll check into that and post the outcome here.
Hopefully tonight and tomorrow will be better for her. Please continue to keep her in your thoughts and prayers.
This evening when I stopped by to check on her, she said she just wasn't able to eat. She continues to feel full; the thought of eating makes her sick; and she always has a horrible taste in her mouth. She had not eaten anything today and only drank a couple of ounces of Boost. I wish there was some magic sprinkles we could put on her food to help her eat.
She also said she threw up her medicines twice today. She is taking medicine to calm her stomach, but it can't do much good if it comes right back up. I will check with her doctor to see what other routes or types of medicine might work (e.g., suppositories, tablets that quickly dissolve or injectables). Surely there is something out there.
She did say she is sleeping pretty good. Stacy said she is up several times during the night. It's hard to tell when talking with Mom if she is being truthful with us or just telling us what she knows we want to hear.
I know that at times her voice sounds fairly strong. I can assure you this is not indicative of how she looks or feels. It gets harder each day to see her waste away. I would expect her to be back in the hospital in a few days.
Home health did come by to see her today. Several of the social workers helping Mom know her from when she was the administrator at the nursing home. Their respect her for her is very evident. They assessed her living area and and have made recommendations as to what durable medical equipment she would benefit from having at the condo. Hopefully, we can get this in place tomorrow.
I'm thinking of checking out hospice services. They might be able to provide care that might help her to get strong enough to try chemotherapy. I'll check into that and post the outcome here.
Hopefully tonight and tomorrow will be better for her. Please continue to keep her in your thoughts and prayers.
Wednesday, November 12, 2008
Wednesday, November 12, 2008 - Evening
Mom is home!!! She was discharged from St. Mary's earlier today. The only restrictions she has are the ones she sets. She is free to eat anything she wants. However, her appetite remains a couple of bites here and there. She is also free to undertake any activity she feels up to. Right now, due to her weakness, that consists of getting in and out of bed.
The number and costs of the discharge meds were unbelievable. She probably takes 10 pills in the morning, another 5 at noon, another 5 in the afternoon, and another 7-8 at bedtime. All but 2 were new meds from when she was last at home. We don't know what people who aren't fortunate enough to have the insurance coverage Mom has do. The pharmacy bill for the meds I had filled tonight was almost $700.00 and that is after insurance paid their part.
Mom has an appointment next Thursday, November 13, 2008, morning to meet with the oncologist. We are preparing a list of questions to which we need answers in order to make the right decisions about treatment.
On a side note, I am so proud and excited! This blog has been quoted on another blog! Thanks to Stephanie WestAllen for her link to information about planning your own funeral. You can check it out at idealawg. We certainly plan on using some, if not all, of the suggestions. I will let you know how this party plays out.
Finally, please read the kind words from a friend of a friend of Mom's. "Lori, Even though you don't know me and I don't know you or your mother, I felt moved to let you know how very much I've learned from your blog, Updates on Carol. Lenora was good enough to share it with me since I always asked her about your mother in every email we exchanged and I've been reading on a daily basis.
First of all, you are amazing to do what you are doing and thanks to your nursing training, you are so complete with medical terms and explanations. Your reference to what the pain killers and antibiotics had caused made me aware of why my husband was having problems as well. He had surgery last Tuesday and took antibiotics and pain killers which you pointed out cause constipation then nausea. He had both and, thanks to you, I was able to offer him a bit of information.
My mother passed away in 1981 at the age of 69 from colon cancer and as I read about your mother, I think of mine. What strength it takes for a family to face all that comes with cancer. Please know you, your mother and your family are in my thoughts and prayers. Mention of your 'Plan Your Own Funeral Party' brought tears to my eyes. Seems like a difficult thing to do yet one that will be beneficial to everyone concerned. I know my mother wanted to talk about her funeral more than what I could handle emotionally. Wish I would have been stronger for her. Your family is a beautiful example.
Lenora had asked that I send your mother the set of L.I.F.T. which I did one day last week. There is even a 'cartoon' strip drawn by a lady who works at WalMart -- A Smile For You and it is always Frogs. I know you said she adopted the frog as her inspiration.
May God Richly Bless Your Entire Family
Carol T"
This blog has become so much more than I ever thought it would. Your support is appreciated more than you will know.
The number and costs of the discharge meds were unbelievable. She probably takes 10 pills in the morning, another 5 at noon, another 5 in the afternoon, and another 7-8 at bedtime. All but 2 were new meds from when she was last at home. We don't know what people who aren't fortunate enough to have the insurance coverage Mom has do. The pharmacy bill for the meds I had filled tonight was almost $700.00 and that is after insurance paid their part.
Mom has an appointment next Thursday, November 13, 2008, morning to meet with the oncologist. We are preparing a list of questions to which we need answers in order to make the right decisions about treatment.
On a side note, I am so proud and excited! This blog has been quoted on another blog! Thanks to Stephanie WestAllen for her link to information about planning your own funeral. You can check it out at idealawg. We certainly plan on using some, if not all, of the suggestions. I will let you know how this party plays out.
Finally, please read the kind words from a friend of a friend of Mom's. "Lori, Even though you don't know me and I don't know you or your mother, I felt moved to let you know how very much I've learned from your blog, Updates on Carol. Lenora was good enough to share it with me since I always asked her about your mother in every email we exchanged and I've been reading on a daily basis.
First of all, you are amazing to do what you are doing and thanks to your nursing training, you are so complete with medical terms and explanations. Your reference to what the pain killers and antibiotics had caused made me aware of why my husband was having problems as well. He had surgery last Tuesday and took antibiotics and pain killers which you pointed out cause constipation then nausea. He had both and, thanks to you, I was able to offer him a bit of information.
My mother passed away in 1981 at the age of 69 from colon cancer and as I read about your mother, I think of mine. What strength it takes for a family to face all that comes with cancer. Please know you, your mother and your family are in my thoughts and prayers. Mention of your 'Plan Your Own Funeral Party' brought tears to my eyes. Seems like a difficult thing to do yet one that will be beneficial to everyone concerned. I know my mother wanted to talk about her funeral more than what I could handle emotionally. Wish I would have been stronger for her. Your family is a beautiful example.
Lenora had asked that I send your mother the set of L.I.F.T. which I did one day last week. There is even a 'cartoon' strip drawn by a lady who works at WalMart -- A Smile For You and it is always Frogs. I know you said she adopted the frog as her inspiration.
May God Richly Bless Your Entire Family
Carol T"
This blog has become so much more than I ever thought it would. Your support is appreciated more than you will know.
Tuesday, November 11, 2008
Tuesday, November 11, 2008
Mom continues to improve somewhat. Plans are for her to be discharged home tomorrow with home health services. She will still need around the clock care for a few days. The plans are to get her health status improved to the point were she can start chemotherapy.
Okey and I visited with Mom this morning. She shared with us her visit with her primary care physician. He told her there is no cure for the cancer and that she has just months to live. Mom wants to try chemotherapy in an attempt to lengthen her life a little bit.
Mom has several things she wants to do before she dies. She wants to take a cruise to South America and the Antarctica; go garage saling; read a few more books, and most importantly - spend time with her family. Her immediate plans are to travel to her youngest son, Kevin's, house to celebrate Thanksgiving with her family and friends.
Plans are underway for a "Plan Your Own Funeral" party the end of November. While this might sound morbid, it will allow Mom to take time to let us know what her wishes are for her memorial service. This will help us so we won't have to make some very important decisions in the immediate hours and days after her death and while going through the initial stages of grieving. We have found a website, My Wonderful Life, that will allow us to make sure her wishes are documented and easily retrievable. If you have pre-planned your memorial services or helped someone do so, we would like to hear from you about the experience.
Mom truly does appreciate all the visitors and phone calls while she has been in the hospital. Again, I can't thank her friend, Stacy, enough for the unique role she is playing in Mom's life right now. She continually assures me she is not trying to take over but that she cares for Mom very much. If you get a chance, be sure to thank her. I also appreciate everyone's offer to help me.
Okey and I visited with Mom this morning. She shared with us her visit with her primary care physician. He told her there is no cure for the cancer and that she has just months to live. Mom wants to try chemotherapy in an attempt to lengthen her life a little bit.
Mom has several things she wants to do before she dies. She wants to take a cruise to South America and the Antarctica; go garage saling; read a few more books, and most importantly - spend time with her family. Her immediate plans are to travel to her youngest son, Kevin's, house to celebrate Thanksgiving with her family and friends.
Plans are underway for a "Plan Your Own Funeral" party the end of November. While this might sound morbid, it will allow Mom to take time to let us know what her wishes are for her memorial service. This will help us so we won't have to make some very important decisions in the immediate hours and days after her death and while going through the initial stages of grieving. We have found a website, My Wonderful Life, that will allow us to make sure her wishes are documented and easily retrievable. If you have pre-planned your memorial services or helped someone do so, we would like to hear from you about the experience.
Mom truly does appreciate all the visitors and phone calls while she has been in the hospital. Again, I can't thank her friend, Stacy, enough for the unique role she is playing in Mom's life right now. She continually assures me she is not trying to take over but that she cares for Mom very much. If you get a chance, be sure to thank her. I also appreciate everyone's offer to help me.
Tuesday, November 11, 2008
Happy Veteran's Day. Please be sure to remember and thank a veteran today.
Mom did have the port-a-cath (also called a Medi-port) placed yesterday afternoon. She made it through the procedure just fine. Mom is beginning to look better each day. But we still don't know when she'll be released.
Last night, she had Stacy bring her a slice of pepperoni pizza. She was able to eat a couple of bites of it. She is still receiving nutrients via IV.
I don't have any updates yet for today.
Mom did have the port-a-cath (also called a Medi-port) placed yesterday afternoon. She made it through the procedure just fine. Mom is beginning to look better each day. But we still don't know when she'll be released.
Last night, she had Stacy bring her a slice of pepperoni pizza. She was able to eat a couple of bites of it. She is still receiving nutrients via IV.
I don't have any updates yet for today.
Monday, November 10, 2008
Mom said she was feeling a little bit better this morning. She was scheduled to have the port-a-cath inserted this morning but when I talked with her nurse this afternoon, she still hadn’t gone down to the operating room. I tried calling Mom’s cell phone around 3:30 and didn’t get an answer so she may have been there then.
The nurse told me that Mom walked with physical therapy this morning. She can’t have anything to eat or drink because of the surgery, so I can’t let you know how her appetite is doing today. The nurse said Mom was staying on top of the pain. She also said the plan is to begin chemotherapy. I asked if that would be inpatient or outpatient and she said that would be up to the doctor. I’ll visit more with Mom about it tonight.
The nurse told me that Mom walked with physical therapy this morning. She can’t have anything to eat or drink because of the surgery, so I can’t let you know how her appetite is doing today. The nurse said Mom was staying on top of the pain. She also said the plan is to begin chemotherapy. I asked if that would be inpatient or outpatient and she said that would be up to the doctor. I’ll visit more with Mom about it tonight.
Sunday, November 9, 2008
Sunday, November 9, 2008
Mom is not doing as good as she was yesterday. I believe a total of 3 doctors were in to see her today. One of the medicines she is getting to counteract the nausea and vomiting is causing significant tremors in her hands. The doctor ordered a couple of medicines to counteract that.
While Roxie was there today, she and Mom walked in the halls for a little exercise. Mom is still experiencing some confusion, but much improved. She has been so overloaded with everything the past few weeks, I'm amazed at times that she can process any information now.
They have started her on a regular diet, but she will be fasting after midnight to prepare for the insertion of the port-a-cath sometime tomorrow.
Mom hopes to come home tomorrow, but I'm not sure that is going to happen. I will keep you posted.
While Roxie was there today, she and Mom walked in the halls for a little exercise. Mom is still experiencing some confusion, but much improved. She has been so overloaded with everything the past few weeks, I'm amazed at times that she can process any information now.
They have started her on a regular diet, but she will be fasting after midnight to prepare for the insertion of the port-a-cath sometime tomorrow.
Mom hopes to come home tomorrow, but I'm not sure that is going to happen. I will keep you posted.
Saturday, November 8, 2008
Saturday, November 8, 2008 - Morning
Mom is not feeling very good this morning. She had quite a bit of nausea and vomiting during the night. Also, she said they are talking about putting in a port-a-cath/medi-port. She didn't know when they were going to place the cath. The oncologist ordered blood cultures, a urinalysis, stool culture for possible c-diff. While c-diff is caused by antibiotic use, the treatment is also antibiotics which she continues to receive IV.
The social worker called me today. She explained why Mom is not a candidate for acute rehabilitation - her diagnosis is not approved by Medicare for acute rehab and they don't think Mom can tolerate the high intensity (three hours daily) of the rehab program. Acute rehab is usually approved for patients who have had a stroke, heart attack, or spinal cord injury. The social worker did say that Mom was participating in physical therapy and was walking 250 feet with stand-by assistance. Mom did say she would be willing to participate in outpatient physical or occupational therapy. The goal of the rehab program is to help Mom gain strength in hopes that she will be able to tolerate chemotherapy better.
The social worker called me today. She explained why Mom is not a candidate for acute rehabilitation - her diagnosis is not approved by Medicare for acute rehab and they don't think Mom can tolerate the high intensity (three hours daily) of the rehab program. Acute rehab is usually approved for patients who have had a stroke, heart attack, or spinal cord injury. The social worker did say that Mom was participating in physical therapy and was walking 250 feet with stand-by assistance. Mom did say she would be willing to participate in outpatient physical or occupational therapy. The goal of the rehab program is to help Mom gain strength in hopes that she will be able to tolerate chemotherapy better.
Friday, November 7, 2008 - Evening
I stopped by the hospital tonight and took Mom her mail and newspapers. She really looks forward to the cards and letters from everyone. I would like to ask everyone to send her a card with a frog on it. She has adopted the frog as her token of inspiration during this difficult time. There's a long story behind this. If any of her friends would like to write about it and email it to me, I am more than willing to post it.
She looked a bit better tonight. She was still receiving the blood transfusion. She's remains on a full liquid diet, but is hoping the doctor will put her on a regular diet tomorrow. She says she's hungry and would really like a hamburger.
While I was there, Stacy stopped by (with the eyeshadow); her granddaughter Lacy and great granddaughter Ava, as well as her other granddaughter Gina and her friend Mike stopped by to see her.
She looked a bit better tonight. She was still receiving the blood transfusion. She's remains on a full liquid diet, but is hoping the doctor will put her on a regular diet tomorrow. She says she's hungry and would really like a hamburger.
While I was there, Stacy stopped by (with the eyeshadow); her granddaughter Lacy and great granddaughter Ava, as well as her other granddaughter Gina and her friend Mike stopped by to see her.
Friday, November 7, 2008
Friday, November 7, 2008 - Morning and Noon
I spoke with Mom this morning. On the scale of 1-10, she said she was feeling like a 5. She said two doctors had been in to see her, one being the oncologist and she didn’t know who the other one was or what he was seeing her for. She said they said what they always say – they want to monitor her a couple more days.
I spoke with her nurse this afternoon. She said she thought Mom’s confusion was better, but that her pain had worsened. She’s been getting pain medicine as she needs it and they also changed her pain patch medicine today.
Her blood work today revealed she is still anemic – her hemoglobin is 9.9. Normal range is around 14. There are some new data to suggest that hemoglobin levels in the range of 10-12 are critically important in terms of the onset of fatigue. Her oncologist believes she would benefit from receiving a blood transfusion and has ordered such. Also, her potassium is still low and they are giving her another IV bolus of potassium. She probably will feel much better after the blood transfusion.
The nurse said her appetite comes and goes. She didn’t eat hardly anything for breakfast, but did eat a little bit for lunch.
Mom's close friend Stacy said she spoke with her today. Stacy said Mom said she never got rid of the back pain from last night. She also told Stacy she was going to get 2 units of blood today. She did ask Stacy to bring her some eye shadow so she can look more presentable.
I plan on visiting Mom this evening and hope to give you all another update tonight.
I spoke with her nurse this afternoon. She said she thought Mom’s confusion was better, but that her pain had worsened. She’s been getting pain medicine as she needs it and they also changed her pain patch medicine today.
Her blood work today revealed she is still anemic – her hemoglobin is 9.9. Normal range is around 14. There are some new data to suggest that hemoglobin levels in the range of 10-12 are critically important in terms of the onset of fatigue. Her oncologist believes she would benefit from receiving a blood transfusion and has ordered such. Also, her potassium is still low and they are giving her another IV bolus of potassium. She probably will feel much better after the blood transfusion.
The nurse said her appetite comes and goes. She didn’t eat hardly anything for breakfast, but did eat a little bit for lunch.
Mom's close friend Stacy said she spoke with her today. Stacy said Mom said she never got rid of the back pain from last night. She also told Stacy she was going to get 2 units of blood today. She did ask Stacy to bring her some eye shadow so she can look more presentable.
I plan on visiting Mom this evening and hope to give you all another update tonight.
Thursday, November 6, 2008
Thursday, November 6, 2008
Mom continues to improve. She was looking more bright-eyed this morning than she has in a long time. I have started asking her how she feels overall on a scale of 1 to 10. Last night she told me she was a 6. This morning she said a 4-5. I thought this might help me provide the reader with an objective assessement based on her rating, not mine.
She said the oncologist was in early this morning. Again, he wants to continue to monitor her for a couple more days. He also changed a couple of her medicines and order an iron replacement be given IV due to her anemia.
She said she ate a little bit of her cereal this morning (a few bites), drank all of her milk and juice.
We met with the supervisor from the social services department. She is going to have home health visit with Mom to see if she will qualify for home health services after discharge. They will then see what durable medical equipment (cane, walker, etc.) Mom would benefit having. Finally, a professional from a support group will be visiting with Mom in the next couple of days to help her cope with the cancer. I think this will help Mom greatly.
We found that hospice is not an option at this time. Although chemotherapy is at times used as pallative care, a person receiving it cannot qualify for hospice (even though pallative care is what hospice does).
If you would like to share your comments about Mom, you can do so by clicking on the comment link under each daily post.
She said the oncologist was in early this morning. Again, he wants to continue to monitor her for a couple more days. He also changed a couple of her medicines and order an iron replacement be given IV due to her anemia.
She said she ate a little bit of her cereal this morning (a few bites), drank all of her milk and juice.
We met with the supervisor from the social services department. She is going to have home health visit with Mom to see if she will qualify for home health services after discharge. They will then see what durable medical equipment (cane, walker, etc.) Mom would benefit having. Finally, a professional from a support group will be visiting with Mom in the next couple of days to help her cope with the cancer. I think this will help Mom greatly.
We found that hospice is not an option at this time. Although chemotherapy is at times used as pallative care, a person receiving it cannot qualify for hospice (even though pallative care is what hospice does).
If you would like to share your comments about Mom, you can do so by clicking on the comment link under each daily post.
Wednesday, November 5, 2008
Wednesday, November 5, 2008 - Evening
I went and visited with Mom this evening. She was doing much, much better. She was alert and was actually eating soup. She had asked me to bring her some chocolate candy bars which I did. However, when I saw that she was on a full liquid diet, I had to be the bad guy and tell her she couldn't have the Hershey's bar. She was not happy. She said, "Come on Lori, I just want to sneak a little bite." We did talk with the nurse and she said if she didn't see her eating it she couldn't stop her. Mom ate most of the candy bar and hid the rest of it for later.
The nurse said the physical therapist had been up to work with Mom today. She was up and about more than she had been in the past few days.
Stacy was there when I left. Stacy has been an angel in caring for Mom. Hmmm, wonder if she is the 6th kid?
I will post tomorrow after we meet with the Case Manager.
The nurse said the physical therapist had been up to work with Mom today. She was up and about more than she had been in the past few days.
Stacy was there when I left. Stacy has been an angel in caring for Mom. Hmmm, wonder if she is the 6th kid?
I will post tomorrow after we meet with the Case Manager.
Wednesday, November 5, 2008 - Afternoon
Mom just called me with her infamous list. Today she wants:
- Newspaper
- Hairspray
- Big, flat Hershey's chocolate bar
- Mounds candy bar
- Almond Joy candy bar
It looks like her appetite for chocolate candy is back.
Wednesday, November 5, 2008 - Noon
I just heard from the oncologist. He said there are 3 things they are focusing on while Mom is in the hospital.
1 - Nausea: He believes one of the antibiotics is making her nauseated. Also, the use of pain medicines slow down the bowel which blocks passage of any food and contributes to the nausea. They have changed her antibiotics and pain medications to hopefully alleviate the problem.
2 - Nutrition: As you all know she doesn't have much of an appetite. In fact, you could put everything she has eaten in the past month on one dinner plate. They are giving her nutrition via the IV.
3. - Confusion: Again, the oncologist believes this is primarily due to the pain medications. The meds slow down the functioning of the liver and other organs with filter the blood. He is trying to flush the meds out of her blood stream quicker which will prevent the buildup which leads to the confusion.
They are shooting for possible discharge on Saturday. He would like for her to go to rehab for a couple of weeks post discharge and then possibly start chemo. I will meet with the social worker to discuss available post discharge services.
1 - Nausea: He believes one of the antibiotics is making her nauseated. Also, the use of pain medicines slow down the bowel which blocks passage of any food and contributes to the nausea. They have changed her antibiotics and pain medications to hopefully alleviate the problem.
2 - Nutrition: As you all know she doesn't have much of an appetite. In fact, you could put everything she has eaten in the past month on one dinner plate. They are giving her nutrition via the IV.
3. - Confusion: Again, the oncologist believes this is primarily due to the pain medications. The meds slow down the functioning of the liver and other organs with filter the blood. He is trying to flush the meds out of her blood stream quicker which will prevent the buildup which leads to the confusion.
They are shooting for possible discharge on Saturday. He would like for her to go to rehab for a couple of weeks post discharge and then possibly start chemo. I will meet with the social worker to discuss available post discharge services.
Wednesday, November 5, 2008
I spoke with Mom this morning. She said she was feeling so so. She said a doctor had been in to see her, but she didn't remember who it was or what they said.
I talked with Mom's nurse this morning, She stated the doctor changed some of Mom's medicine this morning. They are also giving her boluses of potassium and magnesium, both of these lab values were very abnormal. The nurse said Mom was still confused but appeared to be oriented at times. Her appetite at breakfast was not very good - she only ate 25% of her meal.
Plans today are for a 2-view chest xray and a KUB (kidneys, ureters, and bladder - a plain film of the abdomen, providing information about abdominal organs including the kidneys, ureters, and bladder), and to continue to monitor her.
I talked with Mom's nurse this morning, She stated the doctor changed some of Mom's medicine this morning. They are also giving her boluses of potassium and magnesium, both of these lab values were very abnormal. The nurse said Mom was still confused but appeared to be oriented at times. Her appetite at breakfast was not very good - she only ate 25% of her meal.
Plans today are for a 2-view chest xray and a KUB (kidneys, ureters, and bladder - a plain film of the abdomen, providing information about abdominal organs including the kidneys, ureters, and bladder), and to continue to monitor her.
Tuesday, November 4, 2008
Tuesday, November 4, 2008 - Evening
Stopped by and visited with Mom tonight after work. She was quite a bit more confused. The confusion might be from a urinary tract infection, her dehydrated state, the pain medications, what is called "hospital psychosis," or a combination of things. Some people, particularly the elderly, are susceptible to this kind of confusion brought on by the unreality of being in a hospital setting. It usually clears within a few days of returning to a familiar setting, such as home.
On the up side, her appetite has improved greatly. The oncologist prescribed a medication that is suppose to stimulate her appetite. She ate 60% of her noon meal.
Currently, they are rehydrating her, running lots and lots of lab tests, giving her lipids to help her malnourished state, and monitoring her. I put a call into the oncologist to get a better understanding of her plan of care. Hopefully I will hear back from him today. If not by noon, I'll call his office.
On the up side, her appetite has improved greatly. The oncologist prescribed a medication that is suppose to stimulate her appetite. She ate 60% of her noon meal.
Currently, they are rehydrating her, running lots and lots of lab tests, giving her lipids to help her malnourished state, and monitoring her. I put a call into the oncologist to get a better understanding of her plan of care. Hopefully I will hear back from him today. If not by noon, I'll call his office.
Tuesday, November 4, 2008 - Morning
Mom said the oncologist was in at 3:50 this morning. He wants to try to increase her nutrition and monitor her over the next couple of days. If she does OK, she will be discharged and once she has built back up her strength, they will discuss the cancer treatment.
Monday, November 3, 2008
Updates on Mom
I had hope to have this blog up and going several days ago, but . . .
The purpose of this blog is to keep the numerous friends and family up-to-date on Mom's battle with pancreatic cancer. As I don't know who knows what, I'm going to go back a little over a month ago and start from there. Please check here on a daily basis for any updates.
9/25/08 - Admitted to St. Mary's for an ERCP. A mass the size of a walnut is discovered on her pancreas. Is kept overnight at St. Mary's and discharged home. Plan is for her to go to Sitemand Cancer Center at BJC in St. Louis for further diagnosis and consultation regarding treatment plan.
10/06/08 - Seen by Dr. Steven Strasberg at Siteman Cancer Center. Is told surgery is not an option. Recommends an endoscopic ultrasound (EUS) in order to get a biopsy. Appointment is made to return on 10/10/08 for EUS.
10/09/08 - Admitted to St. Mary's via the ER. Complaining of abdominal pain and an elevated temperature of 103.8. She had x-rays and CT scan. Drs. are concerned of possible infection. EUS at Siteman Cancer Center is canceled.
10/10/08 - Previous placed stent has become dislodged and blocked with stones. She undergoes another ERCP to replace it. Is told diagnosis is possible pancreatic cancer.
10/12/08 - Met with oncologist. Discusses the use of chemotherapy to shrink the tumor and prevent spread. He ordered a full body scan and a bone scan to determine rate of growth and staging. Bone scan does not show any metastsis to bone. Full body scan does not show anything either.
10/13/08 - Is transferred to University Missouri Health Center (UMHC) for endoscopic ultrasound (EUS) which is scheduled for 10/15/08.
10/15/08 - During the EUS, they run into a problem and have to convert the procedure to an ERCP in order to get tissue for the biopsy.
10/16/08 - Discover that her duodenum was perforated during the EUS (which is a known complication of the procedure). The biopsy is positive for pancreatic cancer. Remains at UMHC for pain control due to excessive air in abdominal cavity due to perforation. On 10/20/08, she requests to be discharged back to St. Mary's for continued care.
10/22/08 - Pain is uncontrollable. After consultation with surgery team, she is life-flighted to Barnes-Jewish-Christian (BJC) hospital in St. Louis for possible emergency surgery. Following pain management team consult on 10/29/08, she is discharged home. Appointment scheduled to see oncologist 11/3/08.
10/30/08 - Two ladies from the church, Doris and Linda, will be staying with Mom during the day. Her friend, Stacy, will be staying with her during the night. Stacy's daughter will also be staying with Mom of an afternoon. Although Mom doesn't think she needs anyone there 24 hours a day, until she is doing much better we disagree with her.
11/3/08 - Returned to St. Mary's ER. Has not eaten or drank anything of significance since being discharged from BJC. She began vomiting yesterday and was still vomiting today. She is very weak and unstable on her feet and is very nauseated. Is admitted to St. Mary's. Oncologist to see her tomorrow morning.
The purpose of this blog is to keep the numerous friends and family up-to-date on Mom's battle with pancreatic cancer. As I don't know who knows what, I'm going to go back a little over a month ago and start from there. Please check here on a daily basis for any updates.
9/25/08 - Admitted to St. Mary's for an ERCP. A mass the size of a walnut is discovered on her pancreas. Is kept overnight at St. Mary's and discharged home. Plan is for her to go to Sitemand Cancer Center at BJC in St. Louis for further diagnosis and consultation regarding treatment plan.
10/06/08 - Seen by Dr. Steven Strasberg at Siteman Cancer Center. Is told surgery is not an option. Recommends an endoscopic ultrasound (EUS) in order to get a biopsy. Appointment is made to return on 10/10/08 for EUS.
10/09/08 - Admitted to St. Mary's via the ER. Complaining of abdominal pain and an elevated temperature of 103.8. She had x-rays and CT scan. Drs. are concerned of possible infection. EUS at Siteman Cancer Center is canceled.
10/10/08 - Previous placed stent has become dislodged and blocked with stones. She undergoes another ERCP to replace it. Is told diagnosis is possible pancreatic cancer.
10/12/08 - Met with oncologist. Discusses the use of chemotherapy to shrink the tumor and prevent spread. He ordered a full body scan and a bone scan to determine rate of growth and staging. Bone scan does not show any metastsis to bone. Full body scan does not show anything either.
10/13/08 - Is transferred to University Missouri Health Center (UMHC) for endoscopic ultrasound (EUS) which is scheduled for 10/15/08.
10/15/08 - During the EUS, they run into a problem and have to convert the procedure to an ERCP in order to get tissue for the biopsy.
10/16/08 - Discover that her duodenum was perforated during the EUS (which is a known complication of the procedure). The biopsy is positive for pancreatic cancer. Remains at UMHC for pain control due to excessive air in abdominal cavity due to perforation. On 10/20/08, she requests to be discharged back to St. Mary's for continued care.
10/22/08 - Pain is uncontrollable. After consultation with surgery team, she is life-flighted to Barnes-Jewish-Christian (BJC) hospital in St. Louis for possible emergency surgery. Following pain management team consult on 10/29/08, she is discharged home. Appointment scheduled to see oncologist 11/3/08.
10/30/08 - Two ladies from the church, Doris and Linda, will be staying with Mom during the day. Her friend, Stacy, will be staying with her during the night. Stacy's daughter will also be staying with Mom of an afternoon. Although Mom doesn't think she needs anyone there 24 hours a day, until she is doing much better we disagree with her.
11/3/08 - Returned to St. Mary's ER. Has not eaten or drank anything of significance since being discharged from BJC. She began vomiting yesterday and was still vomiting today. She is very weak and unstable on her feet and is very nauseated. Is admitted to St. Mary's. Oncologist to see her tomorrow morning.
Subscribe to:
Posts (Atom)