We are receiving lots of help. We have started hospice. They do many things. I am mostly not emotional. I'm sure when the time comes to morn, I will morn. I do cry some everyday. My conversations with Earl have changed. In many ways it is like he is leaving on a trip. We talk about friends that he will see. We saw a monument of Brigham Young and Joseph Smith today and I wondered if Earl is going to get a chance to meet them. There have been a few people from the wagon train who have already passed on and we have had conversations about them.
In addition to hospice, we have friends that come in and help. One of the ladies from the ward, came yesterday and cleaned my kitchen. She is from Brazil. My kitchen hasn't been that clean since I don't know when. We have some other friends coming in today to help me move some furniture around to make it easier for Earl to move around when he needs to.
My cousin Sharon may come over for a couple of weeks. She is a nurse and has done home care before so she would come and help me when hospice isn't here because they can't be here all the time. I have asked if one of the Service Missionaries from the ward could sit with Earl while I go to at least Sacrament meeting tomorrow. They are in the process of releasing me from the library but this all changed so fast they haven't had time to do it yet. They were going to release me anyway we just thought we had a little more time.
I need to find a baby food mill. Earl gets hungry, but sometimes doesn't have the energy to chew a lot. He doesn't eat very much, but I refuse to make him eat bottled baby food.
Earl's son, Jacob, is in the process of getting a 2-week leave from Iraq to see his Dad. This is a miracle all by itself. They haven't spoken in years.
Saturday, January 31, 2009
Wednesday, January 28, 2009
Where we are
This has not been a good week. Starting Thursday, Earl has taken a bad fall each day. His ammonia is really high. His breathing became irregular Monday morning about 3:00. Thanks to good neighbors, I took Earl to the ER while Kathy stayed with Mary. As suspected, his ammonia had gone up even more. The medicine that they give to bring it back down, causes intense diarrhea. Earl doesn't like it (who would?) so it is hard to get him to take it. Generally liver disease patients are on it to keep their ammonia in check. Earl has been on something else because he is so sensitive to it. Now he has no choice. However, he has been on it for two days with no apparent change.
We saw the oncologist yesterday. The long and short of it is that Earl may only have weeks left. The uncontrollable ammonia is yet another indication that he is suffering liver failure. We are starting Community Nursing Services today.
I wasn't expecting the end to come so quickly. Earl seemed to be doing really well during our trip to Seattle. I thought for sure when we got back that his bilirubin would be down when we got back. The bilirubin hasn't come down and the ammonia has risen. Earl doesn't sleep much. Trying to get him to stay in bed at night is a challenge. When we were at the doctor a week ago, Earl mentioned that he was afraid that he would die in his sleep without being able to say goodbye. Turns out that generally when you have liver failure, you just go to sleep and that's it. I think that Earl is avoiding sleep because he doesn't want to die. I don't blame him. I would be the same way I think. They have at least temporarily taken him off his chemo pill so we can find out if it is, somehow, causing the raise in the ammonia.
I talked to Mary about all this yesterday. Her first response was that she doesn't want a new daddy. I told her that it took me so long to find her daddy and I really doubted that we would have to worry about that any time soon. Later when we talked about the good and the bad of her day she said that the good part was painting Wendy's snow. The bad part was finding out that her dad is going to die. I have been wondering if she was really comprehending all of this, I guess she does in her own 7 year old way. Meanwhile, she is sad that because he is so sick and has no immune system, she doesn't get to have friends come over. We didn't let her have many friends over as it was, now it is even harder because she can't have any play dates at our house.
Each day seems to bring new questions and new answers. We are thankful for each day that we have with Earl. I really wanted to have a wagon train reunion for him before he got too sick, now I'm not sure how we could ever get that to happen. Our mailing list is buried on a zip disc and we no longer have a zip drive. I don't know how many of the addresses would even be valid anymore. We haven't mailed out a Mormon Trail News in years.
We saw the oncologist yesterday. The long and short of it is that Earl may only have weeks left. The uncontrollable ammonia is yet another indication that he is suffering liver failure. We are starting Community Nursing Services today.
I wasn't expecting the end to come so quickly. Earl seemed to be doing really well during our trip to Seattle. I thought for sure when we got back that his bilirubin would be down when we got back. The bilirubin hasn't come down and the ammonia has risen. Earl doesn't sleep much. Trying to get him to stay in bed at night is a challenge. When we were at the doctor a week ago, Earl mentioned that he was afraid that he would die in his sleep without being able to say goodbye. Turns out that generally when you have liver failure, you just go to sleep and that's it. I think that Earl is avoiding sleep because he doesn't want to die. I don't blame him. I would be the same way I think. They have at least temporarily taken him off his chemo pill so we can find out if it is, somehow, causing the raise in the ammonia.
I talked to Mary about all this yesterday. Her first response was that she doesn't want a new daddy. I told her that it took me so long to find her daddy and I really doubted that we would have to worry about that any time soon. Later when we talked about the good and the bad of her day she said that the good part was painting Wendy's snow. The bad part was finding out that her dad is going to die. I have been wondering if she was really comprehending all of this, I guess she does in her own 7 year old way. Meanwhile, she is sad that because he is so sick and has no immune system, she doesn't get to have friends come over. We didn't let her have many friends over as it was, now it is even harder because she can't have any play dates at our house.
Each day seems to bring new questions and new answers. We are thankful for each day that we have with Earl. I really wanted to have a wagon train reunion for him before he got too sick, now I'm not sure how we could ever get that to happen. Our mailing list is buried on a zip disc and we no longer have a zip drive. I don't know how many of the addresses would even be valid anymore. We haven't mailed out a Mormon Trail News in years.
Friday, January 23, 2009
New this week
Earl has been on his chemo for about 10 days now. We have just increased his dose today to half of the full dose. I would imagine if it does okay at this level we will be at the full dose by the end of next week.Wednesday we saw the symptom management doctor for the first time. She had a lot of good information for us. She talked to us about pain and the levels of pain. If you have been to the Emergency Room lately, you might be familiar with perceived pain levels. Zero being no pain. 10 is the worst pain you can imagine. In the lower levels of pain the brain can be drawn away from the pain only feeling pain when there is nothing to draw the attention away from the pain. At the upper levels of pain you need to have stronger pain killers to help the brain not dwell on it. Untreated, high levels of pain can break down the immune system and in the case of cancer, can cause the tumors to grow more quickly. Also some pain killers are not effective when your liver isn't functioning properly.
The doctor also recommended that Earl get his abdomen tapped. Earl is retaining water in his abdomen. His belly is expanding. It hurts. So today we had that done. They drained off 3 liters of fluid. No wonder his belly was tight. We had labs done earlier in the week but the lab didn’t do all that we needed to have done so we also had new labs done today. His bilirubin in down but still higher than they want it do be to do Theraphere treatment. The ammonia in his system is really high. We will be working to get that down this week-end. When the ammonia is high, it causes Earl to be a little dingy as far as thought process. It also causes him to be very tired. His body make involutary movements. If it gets too high, it can cause him some serious brain damage, even death so we don't want the ammonia to be high.
Many have expressed concern for me in my role as Earl’s main care giver. I am touched by other’s willingness to help us. I have been thinking about things that I can ask for help with. It has been suggested that I list everything that I do in an average day, then mark off the things that only I can do. Finally, prioritize what is left. Some things may not really be that important. I have been trying to make my list the last couple of days. Although this approach makes it easier, it is still a difficult task. Why do we have such a difficult time asking for help but are so willing to offer to help others?
The doctor also recommended that Earl get his abdomen tapped. Earl is retaining water in his abdomen. His belly is expanding. It hurts. So today we had that done. They drained off 3 liters of fluid. No wonder his belly was tight. We had labs done earlier in the week but the lab didn’t do all that we needed to have done so we also had new labs done today. His bilirubin in down but still higher than they want it do be to do Theraphere treatment. The ammonia in his system is really high. We will be working to get that down this week-end. When the ammonia is high, it causes Earl to be a little dingy as far as thought process. It also causes him to be very tired. His body make involutary movements. If it gets too high, it can cause him some serious brain damage, even death so we don't want the ammonia to be high.
Many have expressed concern for me in my role as Earl’s main care giver. I am touched by other’s willingness to help us. I have been thinking about things that I can ask for help with. It has been suggested that I list everything that I do in an average day, then mark off the things that only I can do. Finally, prioritize what is left. Some things may not really be that important. I have been trying to make my list the last couple of days. Although this approach makes it easier, it is still a difficult task. Why do we have such a difficult time asking for help but are so willing to offer to help others?
Thursday, January 8, 2009
More of the Update
We saw Earl's liver doctor today. The official term is gastroenterologist. We have been seeing Dr. Boschert since 2001. He generally gives his reports straight up so this is what we have learned today.
More often than not people with liver cancer die from liver failure than from the cancer itself. The Therasphere treatment managed to shrink the tumors in the right lobe of the liver (of the two lobes, the right is the largest) so most of the tumors were treated. Unfortunately, the treatment can also kill some of the healthy liver tissue, causing liver failure.
Earl's elevated bilirubin indicates that his liver is failing. According to the medical team, with treatment Earl could live for another 3 to 6 months. If we are lucky we may have up to a year. Without any further treatment they estimate that he may have less than 3 months. We will be starting chemotherapy by the end of next week.
More often than not people with liver cancer die from liver failure than from the cancer itself. The Therasphere treatment managed to shrink the tumors in the right lobe of the liver (of the two lobes, the right is the largest) so most of the tumors were treated. Unfortunately, the treatment can also kill some of the healthy liver tissue, causing liver failure.
Earl's elevated bilirubin indicates that his liver is failing. According to the medical team, with treatment Earl could live for another 3 to 6 months. If we are lucky we may have up to a year. Without any further treatment they estimate that he may have less than 3 months. We will be starting chemotherapy by the end of next week.
Tuesday, January 6, 2009
Its a new year
We spent the holidays in Seattle with Earl's family. We had good visits with his siblings and mother and especially his older children. We stayed at his mom's home where his brother Charlie and his family lives. We were treated like royalty. Earl's sister, Dorothy made it possible for us to make the trip. Charlie and his wife, Michelle would not let us cook for ourselves or clean-up. We were on vacation.
Seattle was snowed in. We didn't go anywhere for the first few days. We arrived in a huge snow storm 5 hours later than we should have. Mary enjoyed playing in the snow with her cousin Jackie who is 3 years old. We were finally able to get some Christmas shopping done on the 23rd.
On Christmas we drove over to pick up Earl's oldes son, Isaac. We made a wrong turn and got stuck in a dead end street trying to turn around. While Earl and I were evaluating our situation, Mary said a prayer for help. It came in the form of 4 nameless strangers with shovels. We were so thankful for their help. We arrived at Dorothy's just in time for a terrific eggs benedict breakfast.
On Saturday, the 27th we went out to dinner with Earl's children. We were able to take a couple of family pictures that included everyone but Jacob who is in Iraq with the Navy.
On Sunday, the 28th we had the Gillmore family Christmas party. What a fun time. The Gillmore's love to have a good time. We had a couple of talent acts, good food and the traditional white elephant game. We were able to take pictures of Earl with many of his siblings.
I will post the pictures on a later post. Today I am consentrating on updating.
We were supposed to come home on the 29th but Earl's mom asked if we could stay longer. We didn't really feel like we had anything that we needed to get back for, so we stayed until the 2nd. Mary and I went to the Seattle Science Center with Jackie and Michelle, Rachel, Jacqui and Aaron.
Mary, Earl and I went to Puyallup to see the monument that Earl's sister, Diane put up. We got lost twice and took quite a drive before we finally got there. Luckily it was still light and the weather held for us. I had never been to Tacoma before and now I have.
We arrived home to snow in Salt Lake City and it has snowed nearly every day since we have been home.
Monday we started finding out Earl's status. Currently his bilirubin is higher than it has ever been. So the Therasphere's treatment has been put on hold. We are not sure if it is definite. We will be starting on a low dose of chemotherapy and see how it goes.
I wanted to end this update on a good note so here is the good news. The first Therasphere treatment has put Earl's Alpha Fetal Protein down into the normal range so the tumors are shrinking. We are going to be looking into seeing if Earl's medications are too high and maybe that will change his numbers. We have another doctor appointment on Thursday. We can only pray that things get better.
Seattle was snowed in. We didn't go anywhere for the first few days. We arrived in a huge snow storm 5 hours later than we should have. Mary enjoyed playing in the snow with her cousin Jackie who is 3 years old. We were finally able to get some Christmas shopping done on the 23rd.
On Christmas we drove over to pick up Earl's oldes son, Isaac. We made a wrong turn and got stuck in a dead end street trying to turn around. While Earl and I were evaluating our situation, Mary said a prayer for help. It came in the form of 4 nameless strangers with shovels. We were so thankful for their help. We arrived at Dorothy's just in time for a terrific eggs benedict breakfast.
On Saturday, the 27th we went out to dinner with Earl's children. We were able to take a couple of family pictures that included everyone but Jacob who is in Iraq with the Navy.
On Sunday, the 28th we had the Gillmore family Christmas party. What a fun time. The Gillmore's love to have a good time. We had a couple of talent acts, good food and the traditional white elephant game. We were able to take pictures of Earl with many of his siblings.
I will post the pictures on a later post. Today I am consentrating on updating.
We were supposed to come home on the 29th but Earl's mom asked if we could stay longer. We didn't really feel like we had anything that we needed to get back for, so we stayed until the 2nd. Mary and I went to the Seattle Science Center with Jackie and Michelle, Rachel, Jacqui and Aaron.
Mary, Earl and I went to Puyallup to see the monument that Earl's sister, Diane put up. We got lost twice and took quite a drive before we finally got there. Luckily it was still light and the weather held for us. I had never been to Tacoma before and now I have.
We arrived home to snow in Salt Lake City and it has snowed nearly every day since we have been home.
Monday we started finding out Earl's status. Currently his bilirubin is higher than it has ever been. So the Therasphere's treatment has been put on hold. We are not sure if it is definite. We will be starting on a low dose of chemotherapy and see how it goes.
I wanted to end this update on a good note so here is the good news. The first Therasphere treatment has put Earl's Alpha Fetal Protein down into the normal range so the tumors are shrinking. We are going to be looking into seeing if Earl's medications are too high and maybe that will change his numbers. We have another doctor appointment on Thursday. We can only pray that things get better.
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