Tuesday night, the right side of my liver completely stopped draining. We called the hospital Wednesday. David changed the bags …but that didn’t work. We called the hospital again and they gave me an appointment for 11am Friday in San Francisco.
David and I made the trip early this morning. Now I have all new tubes inside. I’m getting pretty used to this particular procedure. There are the expected aches and pains, but overall I’m doing ok. I’ve been living on water and ice chips and now have the ok to eat…so David is off to find me a BLT. I hope it tastes good. I will be staying the night here so the medical staff can keep an eye on me, but should be able to go home tomorrow. David will be staying here at the hospital with me. I’m eyeing the small chair in the corner of the room hoping that it makes into a bed or something.
Hopefully this will fix the problem and my bili count will start dropping. If this is the case, I will be able to start chemo again next week. It seems like chemo isn’t a pleasant thing to pray for, but that’s the goal now.
7/28/09
A Perfect Day
Seriously, I had no pain today! I don't know how that happened, but it really felt good to have a pain-free day. I had my blood work done this morning. My bili count is a 10.3 (and a drop from last week), but probably no chemo this week. I will talk to the doctor in the morning to find out for sure.
After my blood work, I was able to sit in the living room, which I usually can't do because I'm in pain. I just sat and talked with my kids, then David came home for lunch and we went for a drive into town. I actually felt like I could go do something. Logan and I went outside to deadhead some roses, then I thought I shouldn't overdo it, so I took a little nap before dinner. My appetite isn't great, but I had chicken and potatoes and fruit and I may have some soup still tonight.
I say that I don't know how it happened that I felt so good today, but I think it must have something to do with all the prayers offered on my behalf. Thank you for the love , encouragement, and prayers.
After my blood work, I was able to sit in the living room, which I usually can't do because I'm in pain. I just sat and talked with my kids, then David came home for lunch and we went for a drive into town. I actually felt like I could go do something. Logan and I went outside to deadhead some roses, then I thought I shouldn't overdo it, so I took a little nap before dinner. My appetite isn't great, but I had chicken and potatoes and fruit and I may have some soup still tonight.
I say that I don't know how it happened that I felt so good today, but I think it must have something to do with all the prayers offered on my behalf. Thank you for the love , encouragement, and prayers.
7/26/09
Pain
Today I had some really bad pain. Not just bad pain, but a horrible, sharp, cramping pain in my back and side from my liver. I couldn't sit or stand and we really weren't sure what to do. We thought the hospital could deliver better or more efficient pain meds through an IV, but Dr. Abrass told me if the pain gets really bad I could take two pain pills. I took two pills, David rubbed my back, which didn't prove to be as helpful as you might think, and he put one of the pain patches on my back. Somehow the combination of those things made the pain subside enough that I could lay down this afternoon. I was able to eat after that and I have felt better this evening since then.
I can manage pain, but I know this disease is progressing in the wrong direction. That's the part that is hard to deal with.
I can manage pain, but I know this disease is progressing in the wrong direction. That's the part that is hard to deal with.
7/24/09
Improving
Today has been a big improvement over yesterday. I was sick with thrush yesterday. It was coming on Wednesday, but I didn't notice the symptoms. It was causing a bad taste in my mouth and making my throat so dry. I even got a vitamin painfully lodged in my throat because it was so dry. It took forever to get it down, and finally after drinking lots of water and massaging my throat it went down. It was painful! My mom was at my house yesterday and I felt so bad that I couldn't get out of bed, not even to eat. The Home Health nurse (She is so nice!) called to check on me and when I told her my situation, she suggested some things to help. She called the doctor and got me a prescription that has really helped me. I feel so much better today. I am able to eat and drink and get up, so that's a big improvement.
One other improvement for my surroundings was that when my mom came, she brought me new sheets for my bed. They feel really nice, but the best part is that they are not yellow. My other ones are a mustard color that I liked until I got sick. With my jaundice, it's just not a good color for me. These new ones are cream colored and they are great.
One other improvement for my surroundings was that when my mom came, she brought me new sheets for my bed. They feel really nice, but the best part is that they are not yellow. My other ones are a mustard color that I liked until I got sick. With my jaundice, it's just not a good color for me. These new ones are cream colored and they are great.
7/22/09
No Chemo This Week
As expected, I will have no chemo this week. The doctor said to rest and eat up and let's hope my bili comes down. There is some high-calorie fluid they can give me to help me gain some weight, but the doctor said it has to go through my nose, to which I said, "No, thank you, I'll just eat more." I have a lot of tubes right now, but I sure don't need one going in my nose if I can avoid it. My doctor agrees, eating more is the way for me to go right now.
Home Health Care came out this afternoon. They checked my bili bags and helped me change my bandages. It was nice to have them come to my home and they will come back next week. We had Chinese food last night that I had for lunch today. I ate what seems like a lot to me right now and it tasted good. Logan made me a milkshake with protein powder in it and I had it finished in a matter of minutes. I had a good day with a few visitors and no naps, so I am looking forward to sleeping well tonight. My next appointment is to get my blood tests done early next week. Until then, I'm just eating, resting and draining.
Home Health Care came out this afternoon. They checked my bili bags and helped me change my bandages. It was nice to have them come to my home and they will come back next week. We had Chinese food last night that I had for lunch today. I ate what seems like a lot to me right now and it tasted good. Logan made me a milkshake with protein powder in it and I had it finished in a matter of minutes. I had a good day with a few visitors and no naps, so I am looking forward to sleeping well tonight. My next appointment is to get my blood tests done early next week. Until then, I'm just eating, resting and draining.
7/21/09
Another day...
I did not hear from the doctor today, but I am pretty sure there is no chemo for me this week. I'll know tomorrow for sure. Home Health is coming tomorrow afternoon to assess my needs. There may be things they can do to help with my bili bags and other medical concerns.
I have felt pretty good today, except for a bit more stomach pain. I have a pain patch that releases pain killers, plus the pain meds that I take on schedule. The pain patch wasn't laying flat on my skin for a few days and it actually came off today. I wasn't sure up until now if it was doing anything, but I'm here to tell you that it does. I am trying to eat, but it's hard. I can't really explain it, and I have had many offers from people who are willing to do some of the eating for me -- if only I could take them up on it! Food just doesn't taste good to me. It's not so much that eating makes me sick, but I have this metally taste in my mouth and it's hard to get food down.
There is not a lot going on for me today, I had my "normal" morning routine, which includes a short nap, but I didn't have an afternoon nap today. I hope that means I will sleep well tonight.
I have felt pretty good today, except for a bit more stomach pain. I have a pain patch that releases pain killers, plus the pain meds that I take on schedule. The pain patch wasn't laying flat on my skin for a few days and it actually came off today. I wasn't sure up until now if it was doing anything, but I'm here to tell you that it does. I am trying to eat, but it's hard. I can't really explain it, and I have had many offers from people who are willing to do some of the eating for me -- if only I could take them up on it! Food just doesn't taste good to me. It's not so much that eating makes me sick, but I have this metally taste in my mouth and it's hard to get food down.
There is not a lot going on for me today, I had my "normal" morning routine, which includes a short nap, but I didn't have an afternoon nap today. I hope that means I will sleep well tonight.
7/20/09
Blood Work
My bili count was a 12.3 today. That is down slightly from last week, but still higher than it's been for a while. Tomorrow I will talk to Dr. Abrass to see what he thinks, but I'm pretty sure this means no chemo this week. I have been draining a lot of fluid since my last chemo, and I'd hoped it would result in a lower bili count. It's very frustrating to see that count so high when I want it going the other direction so I can have more treatments.
Physically, I have felt pretty good today. I had a nice nap and I have been trying to eat. I drank 1 1/2 Ensures and David suggested I eat as many cookies as I can, but I could only get down one. Normally, I would have no problem eating a bunch, but it is just really hard now. I am taking my pain meds every four hours now. I have been sporadic about taking them. I take them, then it feels like I'd be fine without them so I go off them, but then I have the pain again and I realize I still need them. So now I am writing down when I take them so I can consistently take them every four hours.
Thank you for the prayers and supportive comments, cards and calls. I appreciate knowing so many people are in my corner!
Physically, I have felt pretty good today. I had a nice nap and I have been trying to eat. I drank 1 1/2 Ensures and David suggested I eat as many cookies as I can, but I could only get down one. Normally, I would have no problem eating a bunch, but it is just really hard now. I am taking my pain meds every four hours now. I have been sporadic about taking them. I take them, then it feels like I'd be fine without them so I go off them, but then I have the pain again and I realize I still need them. So now I am writing down when I take them so I can consistently take them every four hours.
Thank you for the prayers and supportive comments, cards and calls. I appreciate knowing so many people are in my corner!
7/18/09
Still Recovering
Thursday night, after my drive home from Reno, I was still feeling a little sick from the chemo the week before. I went to a lot of effort to get extra calories that day, but I lost them that evening with lingering sickness. So it was a good call not to have another chemo that day since I was still sick from the first one. I think it's safe to say that now I am over the chemo sickness.
Friday my parents came to Fallon for a visit. Logan helped me get ready and we enjoyed having them here. I felt pretty good most of the time, but I was weak and had to lay down a lot, so we had to do some of our visiting in my room while I was laying down. They stayed over night and this morning my mom worked in my flower beds and my dad sat with me on the porch. We took a little drive into town. It felt nice just to be out. I have not had any more throwing up, but I have no energy. I'm not sleepy like I was and I don't have the aching in my stomach like I was having, so I take that as a sign of improvement.
Today our family celebrates David's birthday. Of course I don't have anything big planned, but I would like him to know how much we love him and what an anchor he is in our family. There have been many prayers offered on my behalf, but I couldn't get through this without David being with me every step of the way. We love his strength (not just his physical strength, but we appreciate that too!), his wisdom, and his optimistic, upbeat disposition. To celebrate, some friends came to town and they went to get pizza and we'll have cake later tonight. It's not our typical birthday celebration, but I didn't want the day to pass without acknowledging how wonderful he is and how thankful we are for him.
Friday my parents came to Fallon for a visit. Logan helped me get ready and we enjoyed having them here. I felt pretty good most of the time, but I was weak and had to lay down a lot, so we had to do some of our visiting in my room while I was laying down. They stayed over night and this morning my mom worked in my flower beds and my dad sat with me on the porch. We took a little drive into town. It felt nice just to be out. I have not had any more throwing up, but I have no energy. I'm not sleepy like I was and I don't have the aching in my stomach like I was having, so I take that as a sign of improvement.
Today our family celebrates David's birthday. Of course I don't have anything big planned, but I would like him to know how much we love him and what an anchor he is in our family. There have been many prayers offered on my behalf, but I couldn't get through this without David being with me every step of the way. We love his strength (not just his physical strength, but we appreciate that too!), his wisdom, and his optimistic, upbeat disposition. To celebrate, some friends came to town and they went to get pizza and we'll have cake later tonight. It's not our typical birthday celebration, but I didn't want the day to pass without acknowledging how wonderful he is and how thankful we are for him.
7/16/09
Brazillian Lemonade Recipe
There is an update for today after this recipe, so please keep reading. I'm just not sure how to adjust the order of these posts.
My friend Marianne Schiffer brought this over to me and it was so good. With her permission, I wanted to share her recipe.
Ingredients:
5 limes, one is for garnish
6 cups water
1 cup sugar
6 Tablespoons sweetened condensed milk
Directions:
Mix the water and sugar. This can be done the day before and stored in a pitcher in the fridge. Use 4 of the limes. Wash, cut ends off and cut into eighths. In a blender, add 3 cups of the water/sugar mixture and 2 of the cut limes. Blend until smooth. Run through a sieve or cheesecloth and pour into serving pitcher. Repeat with the remaining water and limes. Add the sweetened condensed milk and stir. Garnish with additional lime and serve immediately over ice. This doesn't keep well, so plan on drinking it all!
My friend Marianne Schiffer brought this over to me and it was so good. With her permission, I wanted to share her recipe.
Ingredients:
5 limes, one is for garnish
6 cups water
1 cup sugar
6 Tablespoons sweetened condensed milk
Directions:
Mix the water and sugar. This can be done the day before and stored in a pitcher in the fridge. Use 4 of the limes. Wash, cut ends off and cut into eighths. In a blender, add 3 cups of the water/sugar mixture and 2 of the cut limes. Blend until smooth. Run through a sieve or cheesecloth and pour into serving pitcher. Repeat with the remaining water and limes. Add the sweetened condensed milk and stir. Garnish with additional lime and serve immediately over ice. This doesn't keep well, so plan on drinking it all!
Good News/Bad News
I'll start with the bad news. We went in for my chemo appointment and after meeting with the doctor, he decided I should not have chemo today. The doctor said I am frail (I lost quite a bit of weight last week), exhausted, my bili is too high, and the chemo from last week is still in my system. Dr. Abrass said that I am to eat, eat, eat! He suggested eating hot fudge sundaes all day, but I don't think I my body could take that right now. I will go in Monday for bloodwork and then talk to Dr. Abrass on Tuesday to make a plan for my next chemo.
The good news is that I was really relieved not to have to go through that so soon, even though I know I need it. The whole morning I was dreading the appointment, so it was a blessing to me to have a bit longer to recuperate. I think I'll be able to handle it better if I can get a little more of my strength back. Then we were in Reno with nothing scheduled, so we went to my mom's house. David ran some errands and two of my sisters and a niece and nephew came to visit. It was so nice to be out of my house and to see my family and to be awake long enough to enjoy seeing them.
Another good thing for me was that two dear friends organized a little cleaning spree at my house today. Now my house is absolutely sparkling! I think I rest better in a clean house, so this is just what I needed. Also, we have received many delicious meals and we have felt the countless prayers. Thank you all for thinking of us. We so appreciate your love and kindness!
The good news is that I was really relieved not to have to go through that so soon, even though I know I need it. The whole morning I was dreading the appointment, so it was a blessing to me to have a bit longer to recuperate. I think I'll be able to handle it better if I can get a little more of my strength back. Then we were in Reno with nothing scheduled, so we went to my mom's house. David ran some errands and two of my sisters and a niece and nephew came to visit. It was so nice to be out of my house and to see my family and to be awake long enough to enjoy seeing them.
Another good thing for me was that two dear friends organized a little cleaning spree at my house today. Now my house is absolutely sparkling! I think I rest better in a clean house, so this is just what I needed. Also, we have received many delicious meals and we have felt the countless prayers. Thank you all for thinking of us. We so appreciate your love and kindness!
7/15/09
Blood Test
I went to get my blood tested today. My white and red counts are o.k., but my bilirubin is at 13, which was a disappointing surprise to me. I was hoping it would go down. I am really tired and I am just hoping that my blood counts stay up so I can get chemo tomorrow. I hope maybe the next chemo will help my bilirubin count. Thank you for the prayers.
7/14/09
Long Night
I guess I am ready to get the sickness behind me, and I thought I was done with it before it was completely out of my system. I did not get any sleep last night because I was so nauseous. I spent the whole night trying not to move too much because I was sure I would vomit. I just waited for morning to come and when daylight finally arrived, David made me some cereal and half of an english muffin. That meal lasted about 10 minutes before it came back up. I went back to sleep, then got up to shower and I felt o.k. the rest of the day, but I was tired from missing the whole night's sleep.
I took a good nap in the afternoon, but I kept dreaming about lemonade for the longest time. When I woke up, I really wanted some good lemonade and I was about to call David to have him run by Sonic. Right then, my neighbor Mary Ann called to ask me if I'd like some of the Brazillian lemonade she just made!! She brought over the hugest glass of that, and I thought I'd never drink it all, but I did and it was delicious. What a well-timed surprise for me! It was delicious, made with sweetened condensed milk and limes that you blend and run through a cheesecloth. Maybe I should post a recipe!
I hope that now I can say that I am over the sickness. I really want to recuperate enough for another treatment on Thursday. I could get to my appointment and if my blood counts are not normal, they would just have to send me home. That would be a real bummer! My appointment on Thursday is for one hour of chemo, as opposed to the four hour chemo I had last week. I'm not sure what the difference will be, but I'll let you know when I find out.
I took a good nap in the afternoon, but I kept dreaming about lemonade for the longest time. When I woke up, I really wanted some good lemonade and I was about to call David to have him run by Sonic. Right then, my neighbor Mary Ann called to ask me if I'd like some of the Brazillian lemonade she just made!! She brought over the hugest glass of that, and I thought I'd never drink it all, but I did and it was delicious. What a well-timed surprise for me! It was delicious, made with sweetened condensed milk and limes that you blend and run through a cheesecloth. Maybe I should post a recipe!
I hope that now I can say that I am over the sickness. I really want to recuperate enough for another treatment on Thursday. I could get to my appointment and if my blood counts are not normal, they would just have to send me home. That would be a real bummer! My appointment on Thursday is for one hour of chemo, as opposed to the four hour chemo I had last week. I'm not sure what the difference will be, but I'll let you know when I find out.
7/13/09
Feeling Better
I think the sickness is gone. I was able to eat a little more today, but I have been so very tired. I slept really well this afternoon and it's only a few hours later and I am ready to go to bed again! I have also been very thirsty and I have had lots of water. My mother-in-law came over today and stayed the whole day doing laundry and things around the house. It was so nice and I was really glad to have her here.
I got a perscription for these back patches that seem to help with my back pain. I tried the samples I got from the chemo nurse and they work really well, so now I have some of my own. Since I filled this perscription, my back hasn't hurt, but I'll be ready if it starts to hurt again.
I have no appointments tomorrow, just resting and hopefully getting stronger for Thursday to do it all again!
I got a perscription for these back patches that seem to help with my back pain. I tried the samples I got from the chemo nurse and they work really well, so now I have some of my own. Since I filled this perscription, my back hasn't hurt, but I'll be ready if it starts to hurt again.
I have no appointments tomorrow, just resting and hopefully getting stronger for Thursday to do it all again!
7/12/09
Sickness
Apparently, I am not completely immune to post-chemo sickness. The sickness hit on Saturday evening, but by today it is finally getting better. I have been able to eat some and I have slept off and on. I am still nauseous, but I think (I hope!) the worst of it is behind me. The nurse said three days of sickness, so it was really a blessing to have one and a half days of sleepiness and one and a half of sickness.
I have no appointments until Wednesday when I get my blood drawn to check my bili count and test my white and red blood cell counts. They will check again just before my chemo appointment on Thursday as well. I am just planning to rest, eat what I can, and hope to be feeling better tomorrow.
I have no appointments until Wednesday when I get my blood drawn to check my bili count and test my white and red blood cell counts. They will check again just before my chemo appointment on Thursday as well. I am just planning to rest, eat what I can, and hope to be feeling better tomorrow.
7/10/09
Chemo Side Effects
OK, I've been waiting for the nausea to start like they promised, but so far all I have done is slept today. Not just sleep where you lay there and hear what's going on like it's far away, but deep, hard sleep. I have been draining a lot and I ate some, then slept some more. Maybe tomorrow will be worse, but so far (knock on wood) this is not as bad as I was expecting.
7/9/09
First Chemo
This was a day I'd been both looking forward to and dreading at the same time. As of this evening, I can say that it wasn't too bad and I was even pleasantly surprised by several elements of my first chemo treatment.
I had to be weighed before starting the process today, and the tech who was doing this offered to take my purse, which was a "Life is Good" bookbag. Then I showed him that it contained all my bile bags and tubes, so it stayed with me while I was weighed. They put the IV into my arm, a few inches above my wrist. They had to do a lot of vein-tapping and even use a hot pad to find a vein. I guess my veins are not what they used to be.
The first surprise was the comfy recliner treatment chair. I haven't been comfortable (or pain-free) for very long in any chair or bed without lots of adjustments to make my back feel better. I even brought my pillow for my back, just in case, which I didn't need. The room where my treament was had about 15 chairs. When I walked in, there was one empty chair just waiting for me. There were lots of ladies in scarves, and I was seated by two ladies that informed me I wouldn't need my book because I was in the party section. They also suggested a patch that has helped their back pain, which I got samples of and I can't wait to try. I may have other ailments, but hopefully this will get rid of the back pain.
The next surprise of the day was the people. These ladies were right, I was in the party section. They loved to talk and I realized every person in that room has a story to share about their cancer and treatment. They were mostly older than me. The lady next to me held my hand and massaged my arm. When she left, she gave me her phone number. I hadn't thought about lunch, but these women were pulling out snacks left and right. One lady shared her red cherries with me which were so good, and another shared her granola bars. Another lady had a whole ice chest of food. David brought me lunch, but these ladies kept me snacking until I had lunch. I actually think I ate more being there than I do in a normal day. We passed the time by talking and snacking and by the time I left that room, I felt like I had a whole new set of friends.
I learned a few things while I was there from the nurse and patients. I got information about ordering wigs and scarves. The ladies said wigs are expensive and uncomfortable and that scarves are the way to go. Because of my low-dose chemo, it may take three weeks instead of two, but the nurse says I will lose all my hair. I'm hoping to keep my eyebrows and lashes, but there's no way to predict if that will work out for me, we'll just have to wait and see. The nurse also said that I will have flu-like symptoms tomorrow like aches, vomitting, and fever. I told her I have nauseau medication, but she said even with the meds, I will probably be sick tomorrow.
I am scheduled to do this again next Thursday, assuming my white and red blood counts are good. I was worried about having another treatment again in just one week when most of the other patients only come every two or three weeks. Joyce sitting next to me said, "An IV once a week is nothing, you can do that." I think she's right; I can do this.
I had to be weighed before starting the process today, and the tech who was doing this offered to take my purse, which was a "Life is Good" bookbag. Then I showed him that it contained all my bile bags and tubes, so it stayed with me while I was weighed. They put the IV into my arm, a few inches above my wrist. They had to do a lot of vein-tapping and even use a hot pad to find a vein. I guess my veins are not what they used to be.
The first surprise was the comfy recliner treatment chair. I haven't been comfortable (or pain-free) for very long in any chair or bed without lots of adjustments to make my back feel better. I even brought my pillow for my back, just in case, which I didn't need. The room where my treament was had about 15 chairs. When I walked in, there was one empty chair just waiting for me. There were lots of ladies in scarves, and I was seated by two ladies that informed me I wouldn't need my book because I was in the party section. They also suggested a patch that has helped their back pain, which I got samples of and I can't wait to try. I may have other ailments, but hopefully this will get rid of the back pain.
The next surprise of the day was the people. These ladies were right, I was in the party section. They loved to talk and I realized every person in that room has a story to share about their cancer and treatment. They were mostly older than me. The lady next to me held my hand and massaged my arm. When she left, she gave me her phone number. I hadn't thought about lunch, but these women were pulling out snacks left and right. One lady shared her red cherries with me which were so good, and another shared her granola bars. Another lady had a whole ice chest of food. David brought me lunch, but these ladies kept me snacking until I had lunch. I actually think I ate more being there than I do in a normal day. We passed the time by talking and snacking and by the time I left that room, I felt like I had a whole new set of friends.
I learned a few things while I was there from the nurse and patients. I got information about ordering wigs and scarves. The ladies said wigs are expensive and uncomfortable and that scarves are the way to go. Because of my low-dose chemo, it may take three weeks instead of two, but the nurse says I will lose all my hair. I'm hoping to keep my eyebrows and lashes, but there's no way to predict if that will work out for me, we'll just have to wait and see. The nurse also said that I will have flu-like symptoms tomorrow like aches, vomitting, and fever. I told her I have nauseau medication, but she said even with the meds, I will probably be sick tomorrow.
I am scheduled to do this again next Thursday, assuming my white and red blood counts are good. I was worried about having another treatment again in just one week when most of the other patients only come every two or three weeks. Joyce sitting next to me said, "An IV once a week is nothing, you can do that." I think she's right; I can do this.
7/8/09
Anxiously Awaiting Treatment
The first good news of the day is that I got a really cute haircut. How to manage my hair with this illness has been a concern for me, but Lisa (who is Lori Johnson's sister and visiting from Utah) dropped everything to cut my hair. This was so nice because she came to my home and on my schedule. She cut it yesterday, but by the time she finished, I was so tired I had to lay down and I never got it styled. I had enough energy to fix it today, and even snap a photo to share with you all. Who knows what the next weeks will bring for my hair, but today, it's cute and I'm happy with it.
The next good news is that I got a call from Dr. Abrass and I am scheduled for my first chemo treatment tomorrow at 10:40 in Reno. I have a lot of questions, but pretty much all I know is that it will be administered by IV drip and it is a 4-hour appointment. I am also scheduled for the second chemo treatment one week from tomorrow. I didn't get a satisfactory answer to my question of what I should expect in the way of post-chemo sickness, but I guess I'll get my own answer soon enough. I've heard of people who sail through relatively easily and of some who are really sick. I don't know the specifics of what I'm in for, but I do know this is the only way I have to attack the cancer. I'm eating and resting today in preparation for tomorrow. Thanks for the love and prayers!
7/7/09
Bili Count Update
The lab called me to let me know that my bili count was a 7.3. That is up 0.2 from the last hospital test, despite all the fluid that I've been draining over the past few days. That is not what I'd hoped, David thinks it has something to do with the IV fluids I was on in the hospital. Oh well, I still have the green light for chemo on Thursday.
7/6/09
Bili Count
I felt a lot better today and I was not in so much pain. I talked to Dr. Abrass today. He has been on vacation, so he asked how the new drains were working. When I told him my how my bili count dropped from 10.8 to 8.0 to 7.1, and that these new drains are still draining, he told me to get in to the lab to have my count checked! I have been so curious to find out what it is, because I'm sure it has dropped. I arrived a little after 2:00, but it was busy and by the time I got my blood drawn, it was about 3:00. I often get the results the same day, but the lab closed at 7:00 p.m. and I still had no word about my count. So I will anxiously wait until morning and hopefully hear what it is early in the day. As soon as I find out, I'll post it here.
Dr. Abrass also said that I will have another count check on Wednesday and that I will start chemo on Thursday! I've been wanting to start treatment, but now that I have a day to start, I'm pretty nervous about it. I'm not really sure what to expect. If I knew what was coming, I don't know if that would make it better or worse, so maybe ignorance really is bliss. I have a million questions about all the details, but not a lot of answers yet. I know I need the treatment and I'm glad to finally be starting with something to make this better.
Dr. Abrass also said that I will have another count check on Wednesday and that I will start chemo on Thursday! I've been wanting to start treatment, but now that I have a day to start, I'm pretty nervous about it. I'm not really sure what to expect. If I knew what was coming, I don't know if that would make it better or worse, so maybe ignorance really is bliss. I have a million questions about all the details, but not a lot of answers yet. I know I need the treatment and I'm glad to finally be starting with something to make this better.
7/5/09
Draining
Today I have been draining tons from my left side. I have also had a lot of pain on that side, maybe from the rapid drainage. I stayed on my pain meds, but it didn't take the pain away. But if that's what it takes to get my bili count down, then it's worth it. I spent a lot of the day laying down and staying off my feet.
My appetite was better today. I have been eating and drinking Ensures or Enlive juices a couple of times a day. I feel like I'm stronger, so I'm happy about that. Also, I can see that the whites of my eyes are white, not yellow. So I hope I'm making progress. I'll call Dr. Abrass Monday to see what appointments I have this week.
My appetite was better today. I have been eating and drinking Ensures or Enlive juices a couple of times a day. I feel like I'm stronger, so I'm happy about that. Also, I can see that the whites of my eyes are white, not yellow. So I hope I'm making progress. I'll call Dr. Abrass Monday to see what appointments I have this week.
7/3/09
Life is Good
I am so happy to report that I have had another quiet day. I slept well and the pain in my ribs is getting better. I spent a little time outside today watering my flowers. I have been eating better and enjoying some food and my high-calorie drinks. I have one little situation however; when I stand up my feet swell up like balloons. It is the weirdest thing, it only takes about five minutes of being on my feet before they start swelling. It is just my feet, from the ankles down. If anyone has any suggestions for me (besides staying off my feet and putting my feet up, which is what I'm doing) I'd love to have you "comment" me about it.
The right side of my liver is draining like crazy. I had a bag half full, emptied it, and within 30 minutes, it was a quarter full again! For those of you who don't know the average rate of liver drainage, that is really fast compared to what I have been doing over the past few weeks. I don't have another bili count until Wednesday, and I'm anxious to see what it is.
I am so happy to be home and to have such wonderful people supporting my family and me in this illness. Thank you and have a wonderful 4th of July!
The right side of my liver is draining like crazy. I had a bag half full, emptied it, and within 30 minutes, it was a quarter full again! For those of you who don't know the average rate of liver drainage, that is really fast compared to what I have been doing over the past few weeks. I don't have another bili count until Wednesday, and I'm anxious to see what it is.
I am so happy to be home and to have such wonderful people supporting my family and me in this illness. Thank you and have a wonderful 4th of July!
7/2/09
Quiet Day
Today has been quite uneventful, which is something to be grateful for. I was able to be up most of the day. It was a nice change of scenery to not be in bed all day. I took a nap for a few hours this afternoon, but other than that, I was up and out of bed.
There is not much to report, we are looking forward to a quiet Fourth of July. I don't know that we will watch fireworks, but David will cook something on the grill and we'll have a chance to appreciate our country's freedom. We have a lot in our lives to appreciate right now. I am so thankful for my family and friends who are looking out for me. When I came home from the hospital yesterday, there were some of the high-calorie juices like I had in the hospital here waiting for me. Someone else brought by some protein powder drink mixes to help me get the nutrition and calories that I really need, especially if I am starting treatment soon. Thank you all for watching out for me and helping my family through all of this!
There is not much to report, we are looking forward to a quiet Fourth of July. I don't know that we will watch fireworks, but David will cook something on the grill and we'll have a chance to appreciate our country's freedom. We have a lot in our lives to appreciate right now. I am so thankful for my family and friends who are looking out for me. When I came home from the hospital yesterday, there were some of the high-calorie juices like I had in the hospital here waiting for me. Someone else brought by some protein powder drink mixes to help me get the nutrition and calories that I really need, especially if I am starting treatment soon. Thank you all for watching out for me and helping my family through all of this!
7/1/09
Home Again
I had a good night last night, one of the best in a while. They took my blood early this morning for another bili count and it was a 7.0 today!! That is the lowest it's been since my diagnosis, so we were all really happy about that.
I am still in some pain today and I don't have much of an appetite. But medically, things are going well and we were discharged from the hospital. Hadley picked us up at the airport and we came home to a clean house and I was even able to get a little nap.
As of right now, the doctor's plan is to start me on chemo next week. They suspect this drainage is as good as it's going to get and they say I can handle some treatment. I don't have any specifics yet. I have an appointment next week, so I plan to just eat, drain, and rest up for my treatments.
Thank you for the prayers, I'm convinced this is an answer to many specific prayers on my behalf and I can't tell you how much I appreciate it.
I am still in some pain today and I don't have much of an appetite. But medically, things are going well and we were discharged from the hospital. Hadley picked us up at the airport and we came home to a clean house and I was even able to get a little nap.
As of right now, the doctor's plan is to start me on chemo next week. They suspect this drainage is as good as it's going to get and they say I can handle some treatment. I don't have any specifics yet. I have an appointment next week, so I plan to just eat, drain, and rest up for my treatments.
Thank you for the prayers, I'm convinced this is an answer to many specific prayers on my behalf and I can't tell you how much I appreciate it.
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