My bili count was 8.0 today - a whopping 2.1 points lower in just 24 hours! Because of this signigficant drop, they did not have to do any adjustments to my stents. The medical team here has a reasonable expectation that my bili count will still drop some more, we'll have to wait and see.
I had a good night. I had to get up twice in the night, and even though I needed David's help, I didn't have to mentally prepare myself for the pain that comes with movement. They are going to keep me here today and watch me and if all goes well, I will be released tomorrow. Then I'll go see Dr. Abrass in Reno after the weekend and determine my next step.
6/30/09
6/29/09
Today's Surgery
First, may I say that the airplane travel to Oakland is the way to go! Soon after we got settled into our cushy leather seats, I told David I thought we were flying kind of low. He said we were landing. It only took about 35 minutes! We felt like we were in very good hands with the Freys. It was so much nicer than driving. We had a Lincoln Continental waiting for us and no traffic, so we actually arrived at the hospital early.
My bili count was 10.1 before the surgery this morning. I went in to surgery at 11:00. I now have three drains instead of two, one on my right side and two on my left side. The new one on the left side is a little sore and cramping but the others feel good with no pain. These new drains have little holes on the inside to help them drain better. They will check these in the morning and see how they are working. If they are not draining very much by morning, they may go back in and make an adjustment. David was watching and thought the old drain was draining a lot, but we'll see what my bili count is tomorrow.
I arrived in my room at 1:50, after just 40 minutes in recovery, where I promptly went to sleep until 5:00. When I woke up I was hungry. They brought me some unidentifiable dinner, but David went out and found some pasta for me that was really good. The hospital brought me some Enlive juices that are 250 calories each that I am going to try to find at home. So now I just wait until 4:30 a.m.when they will come check my bili count.
We really want to thank everyone for fasting and praying for us. This surgery went as well or better than the doctors hoped. David especially feels that one direct blessing from the fasting was that the recovery was not as long or painful as we expected. Thank you so much for helping us through this ordeal and supporting us with your love, fasting, and prayers.
My bili count was 10.1 before the surgery this morning. I went in to surgery at 11:00. I now have three drains instead of two, one on my right side and two on my left side. The new one on the left side is a little sore and cramping but the others feel good with no pain. These new drains have little holes on the inside to help them drain better. They will check these in the morning and see how they are working. If they are not draining very much by morning, they may go back in and make an adjustment. David was watching and thought the old drain was draining a lot, but we'll see what my bili count is tomorrow.
I arrived in my room at 1:50, after just 40 minutes in recovery, where I promptly went to sleep until 5:00. When I woke up I was hungry. They brought me some unidentifiable dinner, but David went out and found some pasta for me that was really good. The hospital brought me some Enlive juices that are 250 calories each that I am going to try to find at home. So now I just wait until 4:30 a.m.when they will come check my bili count.
We really want to thank everyone for fasting and praying for us. This surgery went as well or better than the doctors hoped. David especially feels that one direct blessing from the fasting was that the recovery was not as long or painful as we expected. Thank you so much for helping us through this ordeal and supporting us with your love, fasting, and prayers.
Quick Update
The surgery looks like it was successful - the doctors found a spot in the liver where the bile wasn't draining and there is now a bili tube there! We'll have more info later, but it looks good so far.
6/28/09
Comfort
I made it to church today! I went to Sacrament meeting, which goes from 9:00 - 10:10. At about 9:45 I was worried I wouldn't be able to finish the meeting, but I made it and I hope to be able to go again. I really enjoyed the talks; they were really comforting and it felt like every talk was written just for me. I felt strengthened by being at church. The rest of the day was nice, I got a little nap and then had a visitor. We walked to my mother-in-law's house and sat under the tree and enjoyed the breeze.
I am ready to go to San Francisco. I have been having this odd wake-me-up pain in my ribs and I am hoping the doctors can tell what's wrong with that bili tube. It's not really draining and we think it's blocked, which may be what's causing the pain. I feel peaceful and hopeful about this trip. Maybe a little scared, but not really. I know the doctors will do everything they can and I hope it works. If it doesn't, we'll cross that bridge when we come to it. Thank you all so much for the fasting and prayers. It has been so humbling and comforting to me to have your support. At this point, we are going on hope and prayers. I know we will get through whatever comes our way.
Surgery is at 9:30 Monday morning. As soon as we're able, we'll get something posted about it.
I am ready to go to San Francisco. I have been having this odd wake-me-up pain in my ribs and I am hoping the doctors can tell what's wrong with that bili tube. It's not really draining and we think it's blocked, which may be what's causing the pain. I feel peaceful and hopeful about this trip. Maybe a little scared, but not really. I know the doctors will do everything they can and I hope it works. If it doesn't, we'll cross that bridge when we come to it. Thank you all so much for the fasting and prayers. It has been so humbling and comforting to me to have your support. At this point, we are going on hope and prayers. I know we will get through whatever comes our way.
Surgery is at 9:30 Monday morning. As soon as we're able, we'll get something posted about it.
6/27/09
Faith and Prayers
I have been talking to my friends about faith and this is a letter that they wanted to share with you.
Dear Blog Readers,
I’m sure you all feel much like we do as you read this blog every day. We all love Sheri and her family and want to do more. It is a desperate and helpless feeling to watch someone so full of life suffer and be debilitated by sickness. Like you, we have prayed and hoped things would turn around, but we haven’t seen real improvement in Sheri’s condition. It has gotten us thinking about faith and prayer and what we know to be true and what more we can do. As Sheri’s family and friends, we are many religions, but we have noticed one thing we all have in common: we are all praying for her. We’d like to suggest we unite our faith and prayers in a specific way in Sheri’s behalf.
As the Bible teaches in James 2:17, “Even so, faith, if it hath not works, is dead, being alone.” We all have a lot of faith, and have offered many prayers, but maybe we can combine it with some works. In thinking about faith, there is a passage in the Bible that applies to how we feel about Sheri. In chapter 17 of Matthew, there is a man who comes to Jesus Christ asking Him to heal his son. His son is vexed with a devil. This man has already taken his son to the disciples who could not cure him. After Jesus heals his son and casts out the devil, the disciples asked Jesus why they could not cast out the devil. Jesus teaches the disciples about faith: “If ye have faith as a grain of mustard seed, ye shall say unto this mountain, Remove hence to yonderplace; and it shall remove; and nothing shall be impossible unto you.” Then the next verse says, “Howbeit this kind goeth not out but by prayer and fasting.” (Matt. 17:20-21)
We invite any of you who would like to join us in fasting and praying for Sheri on Sunday, June 28. There are many things we can pray for, but with her surgery approaching on Monday, I would suggest we pray specifically that Sheri’s surgery be successful so that her bilirubin count will come down and she can start treatment. Fasting is to voluntarily go without food or drink for a certain period of time, such as two meals (breakfast and lunch). You can begin your fast with a prayer, go without food or drink during the time of your fast, then break your fast with a prayer and a meal. When combined with sincere prayer, fasting can give added strength to those in need of blessings. In the Bible, Isaiah also talks about fasting in chapter 58:8, which says in part: “Then shall thy light break forth as the morning, and thine health shall spring forth speedily: and thy righteousness shall go before thee; the glory of the Lord shall be thy rereward.” (Italics added).
We have both fasted and prayed many times and have seen small miracles take place in our own lives. We want so much to help the Faughts in this difficult time. Perhaps her situation is like the family in the book of Matthew that needed fasting as well as prayer. Please join us in this effort on Sunday, before Sheri’s surgery. Thank you for your faith and prayers.
Sincerely,
Anne Hyde and Julie Stockard
Dear Blog Readers,
I’m sure you all feel much like we do as you read this blog every day. We all love Sheri and her family and want to do more. It is a desperate and helpless feeling to watch someone so full of life suffer and be debilitated by sickness. Like you, we have prayed and hoped things would turn around, but we haven’t seen real improvement in Sheri’s condition. It has gotten us thinking about faith and prayer and what we know to be true and what more we can do. As Sheri’s family and friends, we are many religions, but we have noticed one thing we all have in common: we are all praying for her. We’d like to suggest we unite our faith and prayers in a specific way in Sheri’s behalf.
As the Bible teaches in James 2:17, “Even so, faith, if it hath not works, is dead, being alone.” We all have a lot of faith, and have offered many prayers, but maybe we can combine it with some works. In thinking about faith, there is a passage in the Bible that applies to how we feel about Sheri. In chapter 17 of Matthew, there is a man who comes to Jesus Christ asking Him to heal his son. His son is vexed with a devil. This man has already taken his son to the disciples who could not cure him. After Jesus heals his son and casts out the devil, the disciples asked Jesus why they could not cast out the devil. Jesus teaches the disciples about faith: “If ye have faith as a grain of mustard seed, ye shall say unto this mountain, Remove hence to yonderplace; and it shall remove; and nothing shall be impossible unto you.” Then the next verse says, “Howbeit this kind goeth not out but by prayer and fasting.” (Matt. 17:20-21)
We invite any of you who would like to join us in fasting and praying for Sheri on Sunday, June 28. There are many things we can pray for, but with her surgery approaching on Monday, I would suggest we pray specifically that Sheri’s surgery be successful so that her bilirubin count will come down and she can start treatment. Fasting is to voluntarily go without food or drink for a certain period of time, such as two meals (breakfast and lunch). You can begin your fast with a prayer, go without food or drink during the time of your fast, then break your fast with a prayer and a meal. When combined with sincere prayer, fasting can give added strength to those in need of blessings. In the Bible, Isaiah also talks about fasting in chapter 58:8, which says in part: “Then shall thy light break forth as the morning, and thine health shall spring forth speedily: and thy righteousness shall go before thee; the glory of the Lord shall be thy rereward.” (Italics added).
We have both fasted and prayed many times and have seen small miracles take place in our own lives. We want so much to help the Faughts in this difficult time. Perhaps her situation is like the family in the book of Matthew that needed fasting as well as prayer. Please join us in this effort on Sunday, before Sheri’s surgery. Thank you for your faith and prayers.
Sincerely,
Anne Hyde and Julie Stockard
6/26/09
Moving Forward
I wish I could say I had a perfect night’s sleep with my new pain patch; but the truth is I spent the night dealing with quite a bit of pain in my left side where the tube is inserted. Every time I moved or got up it sent another wave to remind me it was there. David got up and went to work this morning and I stayed in bed for a while.
Shortly after I decided I had just enough energy to get myself out of bed, my dear friend from Fernley called. I was still in pain and the hard night had made my voice somewhat stressed. She picked right up on that. Without hesitation she jumped in the shower then on the road to get to my side as soon as possible. She played nurse maid tirelessly until 3pm. I know God is watching over me because he has sent me friends such as this.
About noon I started feeling better and ate a good breakfast complete with the required Ensure. I had several visitors throughout the day and felt strong enough to get some more food down in the afternoon. I mixed an Ensure with a supplement David’s Mom found for cancer patients, creating a 600-calorie “power” drink. It wasn’t too bad and seemed to go down pretty well. If I could get three of those concoctions down a day, I would be set!
The call came in from San Francisco. I have a 9:30am appointment on Monday. They feel strongly that the benefits of the additional stent will outweigh the risks of complications. Joe Frey has offered to fly us to Oakland, where a car will be waiting to take me right to the hospital. All I need is a red carpet.
David and I have come to the conclusion that we will hit a wall if we do nothing. Moving forward is our only option. So, we are going to do our part…put our trust in the doctors to do their part…and lean heavily on the Lord to do His part.
Shortly after I decided I had just enough energy to get myself out of bed, my dear friend from Fernley called. I was still in pain and the hard night had made my voice somewhat stressed. She picked right up on that. Without hesitation she jumped in the shower then on the road to get to my side as soon as possible. She played nurse maid tirelessly until 3pm. I know God is watching over me because he has sent me friends such as this.
About noon I started feeling better and ate a good breakfast complete with the required Ensure. I had several visitors throughout the day and felt strong enough to get some more food down in the afternoon. I mixed an Ensure with a supplement David’s Mom found for cancer patients, creating a 600-calorie “power” drink. It wasn’t too bad and seemed to go down pretty well. If I could get three of those concoctions down a day, I would be set!
The call came in from San Francisco. I have a 9:30am appointment on Monday. They feel strongly that the benefits of the additional stent will outweigh the risks of complications. Joe Frey has offered to fly us to Oakland, where a car will be waiting to take me right to the hospital. All I need is a red carpet.
David and I have come to the conclusion that we will hit a wall if we do nothing. Moving forward is our only option. So, we are going to do our part…put our trust in the doctors to do their part…and lean heavily on the Lord to do His part.
6/25/09
Waiting...or Not?
I had my appointment with Dr. Abrass today. He worried the trip had been unnecessary since my bilirubin levels were too high and there is really nothing he can do yet. That left David and I with the question of “What do we do now?” He advised us that I just have to wait. He wanted me to see how things went over the next 3 weeks then call the center in San Francisco. “Wait” was really not what we wanted to hear. He did prescribe the pain patch so I hope that helps me get more comfortable.
We made the trip home pondering the immediate future. Just as we pulled into the garage, I got a call from San Francisco. They had weighed the risks of more procedures against waiting to see if the bilirubin levels will eventually come down. Dr. Warren now recommends action. Despite the high possibility of complications and the pain involved, they want to put in a third stent on Monday. I would be able to come home again on Tuesday if all goes well. I will get a call tomorrow to let me know what time they want me there on Monday.
David and I are now balancing the positives and negatives of proceeding down this path. We have some sincere praying to do and major decisions to make over the weekend.
We made the trip home pondering the immediate future. Just as we pulled into the garage, I got a call from San Francisco. They had weighed the risks of more procedures against waiting to see if the bilirubin levels will eventually come down. Dr. Warren now recommends action. Despite the high possibility of complications and the pain involved, they want to put in a third stent on Monday. I would be able to come home again on Tuesday if all goes well. I will get a call tomorrow to let me know what time they want me there on Monday.
David and I are now balancing the positives and negatives of proceeding down this path. We have some sincere praying to do and major decisions to make over the weekend.
6/24/09
Taking a Deep Breath
Should I start with the bad news or the good news? Ok, we'll get the bad news over with first. I had my blood drawn and tested today. My bilirubin level has gone up to a 10.7. I had hoped the drains were helping but it seems they are not doing the job. That level is way too high to start chemo. There is talk of giving me a Sentinel patch to manage the pain and to improve “quality of life.” I’m not quite sure “pain management” and “quality of life” belong in the same sentence.
I have an appointment with Dr. Abrass in Reno tomorrow. We will see what he recommends. Today I feel frustrated but I’m trying hard not to give up hope. I’m not sure what God’s plans are for me and am a little confused at this point. However, I’m not quite done praying for miracles.
Better news. I was able to meet my goal to drink 3 entire Ensures today and I’m not nearly as nauseous recently. I have been able to consume (and keep) additional calories so I am hoping for a little bit of weight gain. I have slightly more energy as I eat more but am still so fatigued by all the things I used to take for granted -- like taking a shower or getting dressed. My mom stayed for a couple days and was really helpful. I now have clean laundry, vacuumed floors, and spotless bathrooms. Thanks, Mom!
I have an appointment with Dr. Abrass in Reno tomorrow. We will see what he recommends. Today I feel frustrated but I’m trying hard not to give up hope. I’m not sure what God’s plans are for me and am a little confused at this point. However, I’m not quite done praying for miracles.
Better news. I was able to meet my goal to drink 3 entire Ensures today and I’m not nearly as nauseous recently. I have been able to consume (and keep) additional calories so I am hoping for a little bit of weight gain. I have slightly more energy as I eat more but am still so fatigued by all the things I used to take for granted -- like taking a shower or getting dressed. My mom stayed for a couple days and was really helpful. I now have clean laundry, vacuumed floors, and spotless bathrooms. Thanks, Mom!
6/23/09
Focusing on Food
Oh boy. Kind of a rough patch. I was sick and had chills for most of the night. I finally fell asleep early this morning. I think I'm just not getting enough calories to fuel this fight.
I called my oncologist to see about the possibility of getting a PIC line to help me get more nutrients. I scheduled an appointment for Thursday, but he was out of the office so I called Dr. Warren’s office in San Francisco. His nurse practitioner told me the line would be a bad idea with too many possible complications. She wants me to just “keep eating”. Ok…that sounds easier than it is. I am trying to consume at least 3 Ensures each day and eating small meals often. Successfully keeping everything down is sketchy at best.
My mom is here helping me today. I’m not quite so sick this evening and will try to eat enough of her meatloaf to get some extra calories in me. I’m hoping for a better night.
I called my oncologist to see about the possibility of getting a PIC line to help me get more nutrients. I scheduled an appointment for Thursday, but he was out of the office so I called Dr. Warren’s office in San Francisco. His nurse practitioner told me the line would be a bad idea with too many possible complications. She wants me to just “keep eating”. Ok…that sounds easier than it is. I am trying to consume at least 3 Ensures each day and eating small meals often. Successfully keeping everything down is sketchy at best.
My mom is here helping me today. I’m not quite so sick this evening and will try to eat enough of her meatloaf to get some extra calories in me. I’m hoping for a better night.
6/22/09
Summer Morning
I was up at a quarter to 6 this morning to greet the day. I slipped outside to deadhead my roses and water some plants. I came in and treated myself to a little breakfast. It felt good to be out of bed...but by 7 I was ready for a nap! Later I had enough energy to take a shower and get spiffed up a bit. That was a fortunate thing because I had lots of visitors during the day.
I'm exhausted this evening and longing for a good night's sleep. I am having a hard time finding comfortable positions for my bones. But there's good news too. My bili tubes do seem to be draining better. I am hoping it is enough to make some progress with treatments. I even managed to eat TWO cashews today. Yeah!
I'm exhausted this evening and longing for a good night's sleep. I am having a hard time finding comfortable positions for my bones. But there's good news too. My bili tubes do seem to be draining better. I am hoping it is enough to make some progress with treatments. I even managed to eat TWO cashews today. Yeah!
6/21/09
San Francisco - Day 3
We are home now, but here's an update from our third day in San Francisco. They took my blood early Friday morning and my bili count was an 8.6. I had been fasitng and I was really weak and sick and not able to eat. There was a chance I would get another bili tube put in to help with the draining, but Dr. Warren decided that it is too risky to put in another bili tube in that part of my liver.
David discussed with them our need to begin treatment which may require us to take a few risks. But the doctor said that there was a chance of internal bleeding and infection if they added teh new tube. Either of these could require an extended hospital stay and it would be very painful for me with the way the new tube would need to be positioned. They talked a lot about my quality of life. I don't really think that eating, sleeping and feeling sick is a great way to spend my life, but it is better than being in the hospital for weeks on end. So, we are hoping the new positioning of my original two drains will help get my count down. We will wait for three weeks. I will get my bloodwork done on Wednesdays in the meantime.
We started the drive home late. We got in at 1:00 a.m. on Saturday. I am trying to do more than sleep and eat, but that's about all I could do on Saturday because I felt so nauseous. It's a little discouraging, but I realize that it could be worse. I'm glad to be home and hoping for some good progress with my bili tubes.
David discussed with them our need to begin treatment which may require us to take a few risks. But the doctor said that there was a chance of internal bleeding and infection if they added teh new tube. Either of these could require an extended hospital stay and it would be very painful for me with the way the new tube would need to be positioned. They talked a lot about my quality of life. I don't really think that eating, sleeping and feeling sick is a great way to spend my life, but it is better than being in the hospital for weeks on end. So, we are hoping the new positioning of my original two drains will help get my count down. We will wait for three weeks. I will get my bloodwork done on Wednesdays in the meantime.
We started the drive home late. We got in at 1:00 a.m. on Saturday. I am trying to do more than sleep and eat, but that's about all I could do on Saturday because I felt so nauseous. It's a little discouraging, but I realize that it could be worse. I'm glad to be home and hoping for some good progress with my bili tubes.
6/18/09
San Francisco - Day 2
Here' s a quick update on my day. I slept well last night, until they came in at 1:00 a.m. to check my vitals, then I went right back to sleep, which was nice. I did way better than David who was on the cot. I told him to go do something today, but he said he has all kinds of time to be out in the fresh air and he wants to be with me in this hospital.
My bili count was at 9 this morning, which is not much of a drop. The left drain is draining well, but the right one isn't draining as much. I am scheduled to have blood work at 4:00 a.m. tomorrow. They will check my bili count and if there is significant improvement (I'm not sure how many points would be considered significant) I think I'll be released to go home. If there is not significant improvement, I have an 8:00 a.m. appointment to get a new drain put in to help get my bili count down.
That's all I have for tonight, and if I don't post tomorrow, it may be because I am recovering from getting a new drain put in. I'll get the information out as soon as I'm able.
My bili count was at 9 this morning, which is not much of a drop. The left drain is draining well, but the right one isn't draining as much. I am scheduled to have blood work at 4:00 a.m. tomorrow. They will check my bili count and if there is significant improvement (I'm not sure how many points would be considered significant) I think I'll be released to go home. If there is not significant improvement, I have an 8:00 a.m. appointment to get a new drain put in to help get my bili count down.
That's all I have for tonight, and if I don't post tomorrow, it may be because I am recovering from getting a new drain put in. I'll get the information out as soon as I'm able.
6/17/09
San Francisco - Day 1
We are here in San Francisco and we got blood work done this morning. My count was a 9.3. We met with the doctors this morning and they were in agreement that we need the radiologist to figure out why these stents are not draining to get my bilirubin count down. We left the hospital at about 11:00 a.m. and had to be back at 3:30 to meet with the radiologist, and I had to keep fasting. During this time, we drove to Fisherman's Wharf. I stayed in the car with the sunroof open, and since David was not fasting, he got soup and a sandwich and an ice cream from the candy store.
When we got back to the hospital, which is a different hospital from last time, but still in the same network of hospitals, to my surprise, I recognized the radiologist from the first SF hospital. I know he remembered me and all of my questions, because during our appointment, he asked me to give him the short version instead of the 20 minutes of information I wanted to share with him. They decided to relocate these tubes and do the contrasting again, which was very painful for me the first time. I asked to be heavily sedated and he said no because it won't hurt, and it would make my recovery much easier if I didn't have the extra drugs. During the procedure, I overheard the radiologist who, by the way, can't be over 30, tell another doctor something about my bile ducts. I said, "I'm sorry, what did you say?" I think that took him by surprise, but that's what you get when you recommend fewer drugs. He went on to explain that I have no bile ducts draining on my left side at all because the tumors are too obtrusive. The doctor cut my stitches, moved my bili tube, and stitched me up again. So far, it is draining a lot, but it looks like water. We'll see what they say about that in the morning.
I feel like I am getting some questions answered, especially one that I have been afraid to ask, about how quickly the cancer is growing. Dr. Warren says it is a slow-growing cancer and that we have a window of opportunity. I was relieved to hear that, but it's still a lot of cancer to take care of. Dr. Warren says I have been the topic of the round table discussions all day and will continue to be tomorrow. Everyone is trying to see what they can do for me, and we will discuss some options tomorrow. All of this celebrity didn't result in me getting a better room however; the room is small and the bed is not very comfortable. David is on a tiny cot that is as hard as a rock. I told him he should go back to the hotel, but he is staying with me and I am glad for that.
After the procedure was done and I had the green light to eat, all I could think about was that chicken salad sandwich David had earlier at Fisherman's Wharf. The nurse suggested a closer place, but I'd been thinking about that sandwich since lunchtime. David got it for me and it was delicious. I also enjoyed some treats from the candy shop, and I was told today that I am under strict orders to eat whatever sounds good to me. The only thing that is off-limits to me is alcohol, which is fine with me. Otherwise, I can eat whatever I want.
Before I close, there are so many of you I'd like to thank. It was such a boost to have Milray come help out last weekend. I know there are many of you helping with my kids while we are gone. Thank you so much!! It is really a relief to know our kids are being watched over and loved in our absence. I appreciate all your help and love and prayers.
When we got back to the hospital, which is a different hospital from last time, but still in the same network of hospitals, to my surprise, I recognized the radiologist from the first SF hospital. I know he remembered me and all of my questions, because during our appointment, he asked me to give him the short version instead of the 20 minutes of information I wanted to share with him. They decided to relocate these tubes and do the contrasting again, which was very painful for me the first time. I asked to be heavily sedated and he said no because it won't hurt, and it would make my recovery much easier if I didn't have the extra drugs. During the procedure, I overheard the radiologist who, by the way, can't be over 30, tell another doctor something about my bile ducts. I said, "I'm sorry, what did you say?" I think that took him by surprise, but that's what you get when you recommend fewer drugs. He went on to explain that I have no bile ducts draining on my left side at all because the tumors are too obtrusive. The doctor cut my stitches, moved my bili tube, and stitched me up again. So far, it is draining a lot, but it looks like water. We'll see what they say about that in the morning.
I feel like I am getting some questions answered, especially one that I have been afraid to ask, about how quickly the cancer is growing. Dr. Warren says it is a slow-growing cancer and that we have a window of opportunity. I was relieved to hear that, but it's still a lot of cancer to take care of. Dr. Warren says I have been the topic of the round table discussions all day and will continue to be tomorrow. Everyone is trying to see what they can do for me, and we will discuss some options tomorrow. All of this celebrity didn't result in me getting a better room however; the room is small and the bed is not very comfortable. David is on a tiny cot that is as hard as a rock. I told him he should go back to the hotel, but he is staying with me and I am glad for that.
After the procedure was done and I had the green light to eat, all I could think about was that chicken salad sandwich David had earlier at Fisherman's Wharf. The nurse suggested a closer place, but I'd been thinking about that sandwich since lunchtime. David got it for me and it was delicious. I also enjoyed some treats from the candy shop, and I was told today that I am under strict orders to eat whatever sounds good to me. The only thing that is off-limits to me is alcohol, which is fine with me. Otherwise, I can eat whatever I want.
Before I close, there are so many of you I'd like to thank. It was such a boost to have Milray come help out last weekend. I know there are many of you helping with my kids while we are gone. Thank you so much!! It is really a relief to know our kids are being watched over and loved in our absence. I appreciate all your help and love and prayers.
6/16/09
Change of Plans
I got a call today from the nurse practitioner at the cancer center in San Francisco. She said that Dr. Warren says that after looking at my information, he thinks my tumors are too out of control and he can't do a liver resection on me. He said it would be too risky and it wouldn't work. At least not until I've had chemo to shrink them.
I reminded her that I can't have chemo until my bilirubin count is down. I asked my questions and she called me back after she'd talked to the doctor again. I reminded her that I am just in a holding pattern, waiting for someone who can do something.
So now we have a new plan: David and I are driving to San Francisco tonight so that we can be there first thing in the morning. We will get my bloodwork done in the morning and then get to our appointment with both Dr. Coe (oncologist) and Dr. Warren (surgeon) at 9:30. It is likely that they will want to re-do my stents. That means that I am packing for the weekend. It is likely I will be there until Saturday. I will report more information when I have it.
I reminded her that I can't have chemo until my bilirubin count is down. I asked my questions and she called me back after she'd talked to the doctor again. I reminded her that I am just in a holding pattern, waiting for someone who can do something.
So now we have a new plan: David and I are driving to San Francisco tonight so that we can be there first thing in the morning. We will get my bloodwork done in the morning and then get to our appointment with both Dr. Coe (oncologist) and Dr. Warren (surgeon) at 9:30. It is likely that they will want to re-do my stents. That means that I am packing for the weekend. It is likely I will be there until Saturday. I will report more information when I have it.
6/15/09
Hope
We are getting ready to go to San Francisco on Wednesday. We considered leaving on Tuesday because it is so hard on me to drive. I just can't stay in the same position for very long before I get uncomfortable and very sore. I have to keep moving and that is hard to do on a road trip. We have been so blessed to have friends who are tuned in to our every need. We have someone willing to fly us over from Fallon to Oakland, where we will get a car and drive to our appointment. We don't have to leave Tuesday and that will make the trip so much easier! We will meet with the surgeon and we are hoping for good news. Good news would be that they say they can resect my liver (take part out so it can grow back). They wouldn't do it at this appointment, but I am packing a bag just in case -- you never know. If we do not get the news we are looking for, we will see what other aggressive options are available.
I met today with a friend of a friend who is a spokesperson for a cancer center. This man is a two-time cancer survivor who gave me the advice that you have to be your own advocate in the treatment process. He gave me some good suggestions on how to proceed in my treatment. I will also be getting in touch with a relative of a different friend who had the same thing as me, secondary liver cancer, where they couldn't find the primary cancer and it turned out to be primary bile duct cancer, just like me. He also had the high biliruben that wouldn't come down. He had a liver resection and then chemo and was able to have a good quality of life for quite a few years. I was encouraged to hear of these stories - they give me hope for what is ahead in my life. I am excited to meet with the surgeon in San Francisco and hope there is something they can do. If not, I will have to be my own advocate for more aggressive treament because I want to get going on this and get on with my life.
None of us ever know what surprises life will hand out. I never would have written this into the script of my life. This doesn't feel like the life I'm used to. I keep hoping I will wake up from this bad dream, but I'm pretty sure I won't. I guess this is the new definition of my life, where I hope to eat and not feel sick, sleep and stay comfortable, and have the energy to get a shower before I need to rest during the day. My wardrobe has completely changed, I now look for clothes with stretchy waists that can hide bile bags. I can't say that I wouldn't take my old life back if I had the chance, but I am learning a lot from this new life. However unexpected this turn of events is for me, this is my life at the moment and I am doing my best to learn and grow from it but not be overwhelmed by it. I can't say enough how grateful I am for my family and friends who are making this so much easier to handle. I appreciate your love, kindness, prayers, and willingness to help with things I am unable to do right now. Wish me luck in San Francisco!
I met today with a friend of a friend who is a spokesperson for a cancer center. This man is a two-time cancer survivor who gave me the advice that you have to be your own advocate in the treatment process. He gave me some good suggestions on how to proceed in my treatment. I will also be getting in touch with a relative of a different friend who had the same thing as me, secondary liver cancer, where they couldn't find the primary cancer and it turned out to be primary bile duct cancer, just like me. He also had the high biliruben that wouldn't come down. He had a liver resection and then chemo and was able to have a good quality of life for quite a few years. I was encouraged to hear of these stories - they give me hope for what is ahead in my life. I am excited to meet with the surgeon in San Francisco and hope there is something they can do. If not, I will have to be my own advocate for more aggressive treament because I want to get going on this and get on with my life.
None of us ever know what surprises life will hand out. I never would have written this into the script of my life. This doesn't feel like the life I'm used to. I keep hoping I will wake up from this bad dream, but I'm pretty sure I won't. I guess this is the new definition of my life, where I hope to eat and not feel sick, sleep and stay comfortable, and have the energy to get a shower before I need to rest during the day. My wardrobe has completely changed, I now look for clothes with stretchy waists that can hide bile bags. I can't say that I wouldn't take my old life back if I had the chance, but I am learning a lot from this new life. However unexpected this turn of events is for me, this is my life at the moment and I am doing my best to learn and grow from it but not be overwhelmed by it. I can't say enough how grateful I am for my family and friends who are making this so much easier to handle. I appreciate your love, kindness, prayers, and willingness to help with things I am unable to do right now. Wish me luck in San Francisco!
6/13/09
Food and Flowers
There's not much to tell, but here's a little update on my progress. Thursday night, for the first time since my cancer diagnosis, I slept deeply enough to dream. It was nice to be in a deep sleep, and I hoped maybe I wouldn't need a nap on Friday, but not so; I was still tired enough Friday afternoon that I took a little nap.
Milray made a great dinner here, and I ate some and drank some Ensure, adding another whopping 600 calories to my dinner intake. As much as I have tried to avoid it, I was so nauseous that I felt like I might vomit. I have worried about the possibility of vomitting with these stents in me becuase it seems like it would really hurt and common sense tells me I should avoid it if at all possible. However, it wasn't possible and I ended up vomitting. Suprisingly, it didn't hurt as bad as I anticipated, and it may have been helpful because the bile bag from my stomach that never fills had to be drained twice after that. I lost all those calories, and I know I need them, but it wasn't as bad as I was expecting.
Today I am enjoying a little outside time watching my friends plant some flowers in pots for my yard. I have a homemade lasagna for my freezer and food for when my kids get home that they brought over. I have the best friends in the world! It's true, everyone is taking such good care of me and I appreciate it so much!
Milray made a great dinner here, and I ate some and drank some Ensure, adding another whopping 600 calories to my dinner intake. As much as I have tried to avoid it, I was so nauseous that I felt like I might vomit. I have worried about the possibility of vomitting with these stents in me becuase it seems like it would really hurt and common sense tells me I should avoid it if at all possible. However, it wasn't possible and I ended up vomitting. Suprisingly, it didn't hurt as bad as I anticipated, and it may have been helpful because the bile bag from my stomach that never fills had to be drained twice after that. I lost all those calories, and I know I need them, but it wasn't as bad as I was expecting.
Today I am enjoying a little outside time watching my friends plant some flowers in pots for my yard. I have a homemade lasagna for my freezer and food for when my kids get home that they brought over. I have the best friends in the world! It's true, everyone is taking such good care of me and I appreciate it so much!
6/11/09
Quiet Day
I have felt pretty good today. Hadley and Logan left early this morning to go on the church Youth Conference Trek. They were pretty excited. They are supposed to be roughing it, (no phones!), so I will be excited to hear all about it when they get back on Saturday.
I ran some errands with my mother-in-law. I got the Wal-Mart shopping done, then had to send Sheryl into Raley's for me. I guess one store was all I could handle today. We are getting ready for my friend Milray to come tomorrow. She gets in at 10:30 a.m. and Alex is going to pick her up at the airport. Aside from that, I am just trying to be comfortable enough to get some rest in my unusually quiet house.
I ran some errands with my mother-in-law. I got the Wal-Mart shopping done, then had to send Sheryl into Raley's for me. I guess one store was all I could handle today. We are getting ready for my friend Milray to come tomorrow. She gets in at 10:30 a.m. and Alex is going to pick her up at the airport. Aside from that, I am just trying to be comfortable enough to get some rest in my unusually quiet house.
6/10/09
Lower Count (but not low enough yet)
I went in for my biliruben count today. I told them I was sure it had gone up because I'm as yellow as a lemon, but it was an 8.8, which is down a full point from last week. I have felt good today. Yesterday was rough because I felt nauseous most of the day. I took my nasusea meds twice, and stayed down because I felt like I would vomit, which would not be a good thing for me.
Dr. Abrass called today to see how I've been doing and I asked him when I can start a low-dose chemo. He said that he and Dr. Coe (the SF oncologist) are in agreement that I cannot start even a low-dose chemo until my bili count is down to a 4. He also wants to see what Dr. Warren (the SF liver surgeon) says on Wednesday before we do anything. He reassures me that Dr. Warren can do amazing things. I reminded him that I am like a time bomb ticking and I want to start treatment. He is aware of this, but I still can't start yet.
I want to express my heartfelt gratitude for the many people who are praying for me and helping me and my family get through this. Thank you all - it means so much to me!!!
Dr. Abrass called today to see how I've been doing and I asked him when I can start a low-dose chemo. He said that he and Dr. Coe (the SF oncologist) are in agreement that I cannot start even a low-dose chemo until my bili count is down to a 4. He also wants to see what Dr. Warren (the SF liver surgeon) says on Wednesday before we do anything. He reassures me that Dr. Warren can do amazing things. I reminded him that I am like a time bomb ticking and I want to start treatment. He is aware of this, but I still can't start yet.
I want to express my heartfelt gratitude for the many people who are praying for me and helping me and my family get through this. Thank you all - it means so much to me!!!
6/8/09
Good Day and Helpful Friends
I kicked of the first day of summer vacation feeling pretty sick. I got up and was so nauseous, but I forced down half a bowl of cereal. I still hadn't left the table when Logan came out a while later to make french toast. I had a little of that, then went to bed and slept until noon. Then I got up, ate lunch and showered. From then on, I actually felt pretty good. I did some laundry and cleaned a tiny bit. I didn't take another nap today, so hopefully I will sleep well tonight.
We don't have any news from the doctor about treatment yet. When we go back to San Franscisco, we are going to try to schedule an appointment with the radiologist to check these stents. They are still hurting, which is maybe just the way it is with stents.
I also got a call from a dear friend in Washington to tell me she is flying in this weekend. I was worried I wouldn't be a good hostess. I told her I'm pretty boring right now, I only eat and sleep; but she says she is coming to help, not to be entertained. It is so nice of her and I am really looking forward to her visit.
The ladies from my ward at church are going to start bringing meals in every Monday. Ann Hyde is coordinating all of this. She has gotten enough interest from my friends (besides those in my ward) that she will organize friends to bring meals on Thursdays. I told her we don't need it, but she says there are so many people who want to help that it won't be a burden. It is very humbling to have such a caring group of friends who are concerned and willing to help. I feel like saying thank you is hardly enough. The love we have felt during this time has been amazing and such a source of strength to our family. Thank you!!!
We don't have any news from the doctor about treatment yet. When we go back to San Franscisco, we are going to try to schedule an appointment with the radiologist to check these stents. They are still hurting, which is maybe just the way it is with stents.
I also got a call from a dear friend in Washington to tell me she is flying in this weekend. I was worried I wouldn't be a good hostess. I told her I'm pretty boring right now, I only eat and sleep; but she says she is coming to help, not to be entertained. It is so nice of her and I am really looking forward to her visit.
The ladies from my ward at church are going to start bringing meals in every Monday. Ann Hyde is coordinating all of this. She has gotten enough interest from my friends (besides those in my ward) that she will organize friends to bring meals on Thursdays. I told her we don't need it, but she says there are so many people who want to help that it won't be a burden. It is very humbling to have such a caring group of friends who are concerned and willing to help. I feel like saying thank you is hardly enough. The love we have felt during this time has been amazing and such a source of strength to our family. Thank you!!!
6/7/09
Graduation
Alex's graduation was Friday night, and as a mom, I hate to miss anything my kids are doing, large or small. High school graduation was huge. We had it worked out that I would stay home and watch it broadcast over the internet hooked up to a tv in the den. That seemed like the best way for me to see it and avoid the inevitable walking, sitting, standing, bad weather, and crowds. It was the perfect solution, but I was still feeling sad about not actually being there as Alex was getting ready.
We found out about 15 minutes before start time that it couldn't be broadcast, so at the last minute, I threw on some clothes and off we went to CCHS graduation! We got there late, but they had a golf cart there waiting to bring David and I to the bleachers. I saw a lot of people who I'm sure were surprised to see me, but I just gave them the "queen wave" from the cart as we went to our seats in the back. I was so glad to be there and see Alex and so many of her friends graduate!
After a while I started to get nauseous and it felt like someone was punching me in the back. I knew I wouldn't last for the rest of the ceremony, but it was such a long walk back to the car! So David and I started walking slowly back to the car, and before you know it, there was the little golf cart to take us there. It was perfect timing.
David sat with me in the car with the heater running until the closing prayer was said, then he ran back to the field to give Alex a hug and take picutres. Then we went back home, had some hot cocoa, and I went to bed. I even slept well.
I was really happy about the way it all worked out perfectly for me to be there to see Alex and all the other seniors that I've been watching all these years grow up with her. It was fun to see so many people, and I wish I was physically able to stop and talk to everyone. I heard people calling my name and blowing me kisses and it was nice to feel the love and support. Thank you CCHS for the golf cart rides, it meant so much to me to be there. I wish I was able to do more; but I'm so grateful for what I am able to do.
For the medical update, my biliruben count is at a 9.8, which is an increase of 0.8 over the week. It also means that the two new stents aren't making the difference we'd hoped they would. I can tell that my count has gone up because my eyes are more yellow and my skin is tingly. I can see they are draining stuff out; I had one full bag in 8 hours, which is unusual but it's not enough. We will be discussing with Dr. Abrass what treatment options are for me with my biliruben count where it is. We've spent a lot of time trying to get this count down and it just hasn't really made a significant decrease, so we need to see what we can do to start treatment.
We found out about 15 minutes before start time that it couldn't be broadcast, so at the last minute, I threw on some clothes and off we went to CCHS graduation! We got there late, but they had a golf cart there waiting to bring David and I to the bleachers. I saw a lot of people who I'm sure were surprised to see me, but I just gave them the "queen wave" from the cart as we went to our seats in the back. I was so glad to be there and see Alex and so many of her friends graduate!
After a while I started to get nauseous and it felt like someone was punching me in the back. I knew I wouldn't last for the rest of the ceremony, but it was such a long walk back to the car! So David and I started walking slowly back to the car, and before you know it, there was the little golf cart to take us there. It was perfect timing.
David sat with me in the car with the heater running until the closing prayer was said, then he ran back to the field to give Alex a hug and take picutres. Then we went back home, had some hot cocoa, and I went to bed. I even slept well.
I was really happy about the way it all worked out perfectly for me to be there to see Alex and all the other seniors that I've been watching all these years grow up with her. It was fun to see so many people, and I wish I was physically able to stop and talk to everyone. I heard people calling my name and blowing me kisses and it was nice to feel the love and support. Thank you CCHS for the golf cart rides, it meant so much to me to be there. I wish I was able to do more; but I'm so grateful for what I am able to do.
For the medical update, my biliruben count is at a 9.8, which is an increase of 0.8 over the week. It also means that the two new stents aren't making the difference we'd hoped they would. I can tell that my count has gone up because my eyes are more yellow and my skin is tingly. I can see they are draining stuff out; I had one full bag in 8 hours, which is unusual but it's not enough. We will be discussing with Dr. Abrass what treatment options are for me with my biliruben count where it is. We've spent a lot of time trying to get this count down and it just hasn't really made a significant decrease, so we need to see what we can do to start treatment.
6/4/09
Making Progress
Yesterday I talked to my Reno oncologist, Dr. Abrass. He called to let me know that he has an appointment for me to meet the San Francisco surgeon specialist, Dr. Warren. I only met with the oncologist when I went last week, but this is the doctor that they say can do things no one else will try and they work. This surgeon has read my file and wants to meet me to see what he can do. Dr. Abrass told him that I am a "delightful, young, healthy woman." There is a chance he may try a liver resection, where they take part of the liver out and then it grows back (hopefully healthier). We will go back to San Francisco on June 17 to see what he suggests.
David talked to the San Francisco oncologist and asked what will happen if my biliruben count doesn't come down. They say I will probably start on a low-dose chemo. They don't like to do chemo with a high biliruben, but it is something to try that may get things going in the right direction.
As for my stents, they are a thorn in my side, literally! I'm not having the sharp pain I was having before, but I can feel them every time I take a deep breath and they are just achy. It looks like the stents aren't going anywhere, so I better get used to them.
Overall, I am feeling much better. I have pain medication that I don't need during the day, but it makes a significant difference in how well I sleep, so I just take it at night. I can get up and get ready for the day, but then I am so worn out I have to take a little nap. I am eating--I had some split-pea and ham soup that tasted really good to me, which hasn't happened for a while. Overall, it's progress and I can't complain. So there you have it, another day in my life.
David talked to the San Francisco oncologist and asked what will happen if my biliruben count doesn't come down. They say I will probably start on a low-dose chemo. They don't like to do chemo with a high biliruben, but it is something to try that may get things going in the right direction.
As for my stents, they are a thorn in my side, literally! I'm not having the sharp pain I was having before, but I can feel them every time I take a deep breath and they are just achy. It looks like the stents aren't going anywhere, so I better get used to them.
Overall, I am feeling much better. I have pain medication that I don't need during the day, but it makes a significant difference in how well I sleep, so I just take it at night. I can get up and get ready for the day, but then I am so worn out I have to take a little nap. I am eating--I had some split-pea and ham soup that tasted really good to me, which hasn't happened for a while. Overall, it's progress and I can't complain. So there you have it, another day in my life.
6/2/09
What a Difference a Day Makes!
Today has been a lot better. I got up and showered, then did my hair and make-up. I went to the grocery store and the bank. I didn't drive, but it was nice to get out and do something productive. I can't believe how much better I feel today. Thank you for all your prayers.
6/1/09
Home Sweet Home
David and I made the long drive home from San Franciso Sunday afternoon. I had a lot of pain in my stomach; every bump or turn was painful. It was a trip I don't care to repeat any time soon. Actually, I won't be expected back there until the surgeon needs to see me, which won't be until after I've had some chemo, which, of course, won't be until after my biliruben count comes down. I'm pretty sore today at the stent sites. Moving is hard; I can't get into or out of bed by myself and it takes me a while even with help.
I found out Sunday that my biliruben count is still at a nine. I'm hoping that maybe the silver lining in the dark cloud of having that stent yanked out is that maybe they got it positioned better this time to get my bili count down. I still have the two stents in the same places on the outside, but they repositioned them on the inside. Now I just have to wait to see if this is any more effective. My oncologist wants me to have my count tested every Monday, but since I was tested on Sunday, there is no need to test again today. I'll find out more next week. Until then, there is no way I can have chemo because it would be too toxic to my body with the high biliruben. So I am resting this week, hoping it will help my count come down.
I know it would be wonderful, but I have come to terms with the fact that I am not a liver transplant candidate. I have been told that now by three doctors, including these specialists in San Francisco. I haven't included it here yet, but I found out that my primary cancer is bile duct cancer. The liver cancer is the secondary cancer. I don't know what my treatment options are if my count doesn't come down. I am just trying to rest and stay positive and focused and hopefully something wonderful will happen.
I found out Sunday that my biliruben count is still at a nine. I'm hoping that maybe the silver lining in the dark cloud of having that stent yanked out is that maybe they got it positioned better this time to get my bili count down. I still have the two stents in the same places on the outside, but they repositioned them on the inside. Now I just have to wait to see if this is any more effective. My oncologist wants me to have my count tested every Monday, but since I was tested on Sunday, there is no need to test again today. I'll find out more next week. Until then, there is no way I can have chemo because it would be too toxic to my body with the high biliruben. So I am resting this week, hoping it will help my count come down.
I know it would be wonderful, but I have come to terms with the fact that I am not a liver transplant candidate. I have been told that now by three doctors, including these specialists in San Francisco. I haven't included it here yet, but I found out that my primary cancer is bile duct cancer. The liver cancer is the secondary cancer. I don't know what my treatment options are if my count doesn't come down. I am just trying to rest and stay positive and focused and hopefully something wonderful will happen.
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