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.
6/11/09
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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