Saturday

Things are a lot the same for me as far as my pain goes; I still have the same bad back pain. A few months ago, someone gave me a walker with four wheels. I put it away thinking I would never need something like that. Well, the day has arrived that using it actually helps me get around a little easier. I am trying to use it go just walk around the house because I know I need the movement for my legs and back. David got me some gel pads that I am going to try to ease some of my back pain. I think it will give me a little more cushioning. I'm not sure how they'll work, but I'm going to try them out.

I am scheduled to go in this Thursday to St. Marys for another round of surgery. I am supposed to get my blood tests done sometime before then, so that it what the upcoming week looks like for me. Thank you all for the kind thoughts and prayers.

Monday

Today has been fine, the medication handles my abdominal pain pretty well, but it is the back pain that is hard to get a handle on. It has been worse today and I spend a lot of my day just trying to endure it. I sleep when I can which is nice because I don't feel the pain. My mom came here today to spend the day with me. It is good to have her help and company. I know there are many people who ask about me and pray for me and I want to thank you for that. I really appreciate it.

Back Pain

Things have been pretty uneventful here for the past few days, but yesterday my pain really started to get worse. It was a pretty tough day. The doctor upped my pain medication and it has been better today. I had a nice visit with a friend who rubbed my back while we visited. It helps the back pain, and I thought it felt good enough that I would be able to rest afterward, but when the massage stopped, the pain came back. I did not nap today, and I am hoping I will sleep tonight. Some nights I can sleep, others I am up a lot.

I got my results from my last blood test and my bili count was 13. That is pretty high and Dr. Abrass said that I can't have chemo with a count that high. He also said that there is really nothing he can do for me. The week after next I will go into St. Mary's to have these stents redone. Other than that, I don't have anything medical scheduled.

I have had some delicious food brought in this week, thank you to everyone for such yummy food and for the kindness shown to my family and me.

Out of Bed

I have felt pretty good today, which is a whole lot better than I felt a few days ago. I have tried to stay out of the bedroom. I spent three days in my bed and I don't care to spend much more time in there than I have to right now. I have been in the chair and on the couch in the living room. It's not as comfortable as my bed, but I really don't want to be in my bed. I enjoyed a visit from a friend and I spent some time watching TV. I have been watching these cake decorating shows that are pretty amazing. I especially appreciated being at home instead of in the hospital today, since I was scheduled to be in there today.

No Surgery

Today has been about the same for me with the pain in my back and abdomen. I went ahead and increased the amount of pain medication I am taking, but I am still feeling about the same level of pain.

I am not going to my surgery appointment on Monday. My right side is draining like it should and the stitches are holding up well and not pulling out at all. I think I can wait three more weeks and go in when I am scheduled to have all of these redone. I had my blood tests done on Friday, but I didn't get any results yet. I'm pretty yellow, so I don't know what think about my bili count. Thank you for the prayers, I appreciate them!

Draining

Today has been a really bad day for my pain. It's strange how it had been getting a little better each day and then take such a turn for the worse today. It is so bad in my back and abdomen. It cramps up so that I can hardly move. I am doing what I can to manage the pain, but I know this is part of the progression of this disease.

On a brighter note, last night I looked down and noticed one of my bile bags was filling up and then I realized it was my right bili bag that hasn't drained for almost 3 weeks! This is the one I am supposed to get fixed on Monday. I had to empty it three times last night, so I don't think anything is wrong with it now. That is good news, but now the top one has stopped draining. Given this turn of events, I'm not sure what will happen with my appointment on Monday.

More Surgery

I went in today for blood work. I am scheduled to go in to St. Mary's for a re-do of my right bili tube on Monday morning, so I had to get these blood tests done today. I am glad to only be going to Reno for this, but I am not looking forward to yet another surgical procedure. When I asked them what I should expect in the way of recovery, they said it will be just like the other times I have had it done. I was hoping it might be easier since they just did it, but I guess that doesn't make any difference in how I recover from it. I've had enough experience with this surgery that I am kind of scared. But my right side is not draining at all, so something needs to be done. Other than dreading Monday, I am doing about the same. My back pain is still there, not great, but not the worst I've had. I've also been able to get some rest lately, so that is a good thing.

Feeling Better

My pain has decreased again today. I still feel it, but it is way better than a few days ago. I had a nice day today. I had a visit from a friend who brought flowers and hot chocolate. It was a perfect day for that and I enjoyed watching the storm. It was a pretty quiet day for me with not much to report except that I am feeling a little bit better.

Drainage Tubes

I called the doctor in San Francisco and shared with him my concern that the stent on my right side is not draining. He then called the doctor in Reno to see about re-doing this drain. The plan is to schedule it at St. Mary's to save us the burden of travel. They told me that the tubes clog easily, but it hasn't even been 2 1/2 weeks, so I didn't expect to have to do anything more with this so soon.
One more worry for me is these stitches that hold my tubes in place. They are pulling out and it's kind of gross. David taped one up where the stitches were starting to come out, and the doctor said that we can tape them up or I can push the stitches back in. Eeeww! I spoke to this doctor twice today, and he was very concerned about my discomfort. Although he said what I am expereincing with the stitches is normal, he did have a thought about the pain I've been having. He says it comes from the tumors pressing on the tubes in my liver. There is not much they can do about that, but they could replace one (not all three) of these plastic tubes with a metal tube. There is no guarantee that this would help, but it's nice to know the doctors are still trying to come up with ways to improve what I'm dealing with.
My day was good despite the pain that persists in my back and side. It is still bad enough to wake me up at night, but it has been decreasing since last Wednesday. I had friends come give me a back massage and paint my toenails. It was nice to be pampered. The continual kindness shown to my family is amazing. Thank you for your prayers, meals, and kind thoughts.

A Little Better

Since Wednesday, my pain has gotten a little bit better. I have been able to be up out of bed, which makes a difference for me. Being in bed isn't one bit relaxing or enjoyable when you are in pain and laying there is your only option. I have upped my pain medication, which also helps, and I started using the lydecaine back patches that were prescribed for my back pain a while ago. They were helping, so I was excited to use them. When I took one off, I'd put another right on. I even sat with a heating pad on my back while I was wearing one. Then David was helping me change it and he noticed that my back looked kind of red. When I checked the recommendations on the patches, I remembered they are supposed to be worn for 12 hours on, then 24 hours off. Oops.
I will be in touch with the doctor this week to see if the drains are performing the way they want them to. My right side still isn't draining, which David reminds me may be a good thing if it is draining into my digestive tract like a healthy person's would. We'll see. I did just have surgery last week, so maybe some of this pain is just a normal part of the recovery. I appreciate everyone's kind words and prayers. The support for my family and me is wonderful!

Back Pain

I don't know if it is possible to quantify pain, but I think today was my worst day so far with the pain. I have this grabbing pain in my back and side and it was so intense today. I take my pain meds, but they really don't do anything for my back pain. I was up for breakfast for a little bit and I started feeling nauseous and the pain started to get worse and I had to go back to bed. I was down in bed all day long. I tried to get up for lunch, but I really couldn't, so I ate my lunch in my bed. I was able to get up with my mother-in-law's help at about 4:30. Sheryl did all my laundry and I wasn't able to be up with her or do anything. A friend stopped by who rubbed my back, which really helped my back feel better. Overall, it was a really hard day for me. My only hope is that tomorrow will be better.

Still Recovering

Since I have been back from San Francisco, I have been in quite a lot of pain. I spent the day today sitting in the chair talking to my mother-in-law. I can't lie down because it is hard to get up when I've been down and hard to lie down again after I have to get up from the bed. I alternate between sitting in the chair and standing up and holding onto the chair when the sitting gets too painful. I am hoping that because I did not spend a lot of time down today that I will be able to sleep tonight.

I didn't talk to the doctor today. When I ask questions, there aren't a lot of answers. I guess there's not a set of predictable patterns my illness is following. But I am not draining like I thought I would after this surgery.

On the bright side, Logan made a delicious chili last night - I am telling you she is getting to be a great cook!

Back Home

The trip to San Francisco was quick at least because they didn't even keep me overnight. I was in a lot of pain, more than I was expecting, which is saying somethign because I was expecting to be in some pain. They tell me the surgery was successful so I hope it shows up in my blood test numbers.

We left on Wednesday, drove there, and went in on Thursday morning. They didn't make new incisions, but they made the one on my left side bigger. Since I've been home I've tried to look at it, but it's a lot bigger than before, so it's not pretty. The doctors released me on Thursday, but I was in so much pain on the drive home that we got a hotel about 30 miles away from the hospital and stayed overnight. The pain wasn't in my back like it usually is when I have to be in the car, it was in the sites of the drains and from the inside where they repositioned the tubes in my liver. We finished our drive and got home Friday. I have been resting and my pain is going down each day, so it isn't excruciating now. The SF doctors say I should have this procedure done very six weeks because things get pretty clogged up inside. They also said I can have this done in Reno, which would be much more convenient.

The outcome of this is that I should drain better and my bili count should go down. That way I should be able to have more chemo. So far, my left side is draining more, but my right side is still not draining. I am resting and recovering today while David takes the kids clothes shopping. I am feeling much better than I was two days ago, so I am hopeful that I will continue to feel better. Thank you for your prayers and concern. It's good to be home.