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!
6/22/09
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!
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