Saturday, July 1, 2006

Mark had a couple more really good energy and eating days, but then Sunday he crashed. Nothing at all to eat, and only 8-16 oz of liquid. Monday started off bad too, so I called for home health to come hook him up for some fluids. He was able to eat that night. Tuesday (chemo) day he still wasn't feeling well, so we didn't go. He threw up Tuesday night and Wednesday morning, so we didn't go to chemo Wednesday either. We talked with Dr. Whisenant, and he suggested we take one of the drugs out of his chemo regimen. He will continue with Erbitux, Avastin and 5FU, but we'll lay off the Irinotecan for now. We went in Thursday to get the Erbitux he missed Tues. and Wed., but all of the weight Mark had gained was gone plus some. He only weighed 128 pounds. This is really scary for both Mark and me. The physician's assistant we saw said she did not think it would be a good idea to put chemo in Mark's body. She did think he should have some more fluids however, and they gave him some more anti-nausea medicine as well. Friday, Mark was feeling much better. We are half way through this "round" of chemo. We'll scan again in about 4 weeks to see if this new stuff is working.

Emotionally, it is hard to keep going. Physically it seems exhausting.
We are being carried spiritually right now which it making it possible to make it through the emotional and physical drain this puts on our lives.

Marianne has moved aside and asked me to finish this message. She had a few hard days right along with me, but her smile and good spirits have recently returned. Tessa and Lucas have both been sick this week which has caused us to rely heavily on family, friends and neighbors for support. Although we know how absolutely willing so many of you are to help, it is still hard to ask for help at times. We are again grateful for the help.

It is now Saturday and I am feeling much, much better. In fact, I am going to stop typing right now and weigh myself -- (136). The last two days I have been able to taste food again and even eat food that is a little spicy. I miss spicy food.

Marianne and I went to lunch today and I told her that I was feeling like a normal person -- normal as in not having terminal cancer. It was the first time in a long time that I just forgot about what was going on with our family and the cancer and just lived life. I am not sure if that makes sense. I have had many happy healthy days over the past nine months where I have not thought about cancer and simply enjoyed what I was doing -- but today was somehow different. It was nice.

This is not meant as complaining. Working on extending the quantity and quality of my life and perhaps finding a cure to my cancer requires our family to revolve around cancer right now. For that reason, Marianne and I do not mind at all talking about cancer or my health.

On Monday I will see the doctor again and have several hours of chemo. The nurse will hook me up to the fanny pack for the following two days which will slowly deliver more chemo. Hopefully I will feel good for the Fourth of July. It is one of my favorite holidays.

Happy Fourth of July and thanks again for the support and prayers.

Thursday-June 22,2006

Remember all that weight Mark lost a couple of weeks ago? IT'S BACK! He had his pump removed this morning and we were shocked at the gain. Yes, we were high-fiving and doing a little jig to celebrate. Spicy is still off the menu, but since he's off the Oxaliplatin, cold is good. That means Slurpees are back ON the menu. Sorry, feeling silly, because it's been a great couple of days! Mark's had energy, hasn't felt nauseas and the pain hasn't even been too bad. This is another example of not being able to plan. We fully expected that this week would be on the down side, since Tuesday was a 7+ hour doctor\chemo visit. Instead, Wednesday we took McDonald's food to Tess and Chase for school lunch. The kids loved it. Then we went with Patrick and Lucas to Olive Garden. Mark's not about to eat McD's when he's feeling HUNGRY! I concurred. He's still not able to eat large amounts, but he's doing so good at trying to constantly eat and keep the calories adding up. I was lucky enough to go on the most gorgeous horseback ride in the mountains with my brother and niece. Mark and Patrick have been enjoying the World Cup Soccer and were sad about the USA loss.

I can't remember if we've told you all this already, but the Avastin gives you HICCUPS! They are not a mild, and sometimes even with the medicine that is meant to stop them, they persist. I hate when I have hiccups, so I feel so bad for Mark. They wake him up. He's such a trooper. I'm so impressed with his ability to stay positive with all the junk he's having to go through. I love him so much. I'm grateful everyday that we have each other for eternity.

Monday, June 19, 2006

So the past week went something like this.

Monday - not so great - Mark was really tired still didn't get out of bed much, however, he was able to make it to watch Chase's 1st playoff baseball game, which they won. They also gave Mark the game ball.

Tuesday - worse - didn't sleep the night before, felt so awful that he didn't go to chemo, and he didn't get out of bed.

Wednesday - a little better - well enough to go get chemo. His rash seems really extreme. It's itchy and causing him a lot of pain. Our oldest, Patrick, turned 16 today! We are hoping to take him to New York for his birthday present. He's always wanted to go there, and we think it would be a great time for the three of us to spend together.

Thursday - better feeling - but the rash looks painful. He keeps itching and trying not to pick at it. He was able to make it to Chase's second playoff game - the team lost. Chase, however, was able to get two hits this game. It was a great way for Chase to finish the season.

Friday - a little better or same - still very tired. I don't think he's getting very good sleep. He's so uncomfortable.

Saturday - better. We were able to go to Tess's dance performance and then run a few errands. We worked on laundry (way overdue, so there were mountains).

Sunday - Happy Father's Day - had a bad night, but was determined to make it to church. Today was a Father's Day Mark wouldn't miss for anything. Mark was able to ordain Patrick a priest in our church. We had a lot of family that were able to participate and then join us for a lunch afterward. It was a great day.

Today, Mark woke up feeling pretty good and then all of a sudden he was sick. He has felt a little queasy the rest of the day and hasn't ventured out of the bedroom much, except to get food, which is wonderful. He has been eating more the last couple of days. I hope it means his appetite is coming back, and maybe the mouth is starting to heal. Please keep praying for Mark to have comfort, peace and healing. Our love to all of you.

Sunday, June 11, 2006

Friday ended up being a pretty good day for Mark. Pretty good, means that he was able to eat a little more than Thursday, his spirits were up but he still spent most of the day in bed.

Saturday was a little better still. He ate six small meals and drank lots of fluids. He was able to get out of bed and do some tasks that he wanted to. We were able to go to our Ward (church) Picnic/Carnival for a little while. It was a great party and we saw a lot of people, so that was enjoyable.

The "rash" looked like it might be coming on yesterday, but we weren't sure. This morning however, we are very sure. One side of his face seems to be breaking out more than the other. He said the rash is all over his head, under his hair, itching and making his head ache. If intensity has anything to do with how well the drugs might be working on killing the tumors, then it must be doing some major damage in there. His poor mouth is feeling even more sore and raw. That just doesn't help with the eating problem. Today is a bad day again. He feels weak, sore, tired and frustrated. Patrick was speaking in church today, and Mark couldn't make it to hear him. Patrick did an excellent job. He never ceases to amaze me. He was so confident and seemed as if he's been a public speaker for a long time. It's hard for all of us when CANCER prevents Mark from participating in the things going on in our lives. We've said it before, but I this truly is a new game every day and sometimes every hour. We just keep thinking we can plan what's going to happen, but we are blindsided every time we think we've figured it all out.

Friday, June 9, 2006

Mark's not awake yet, so I'm not sure what today will bring. Yesterday was rough, but by the evening I think he was starting to feel things turning around. We went to have the pump removed for his 5FU chemo, and he was hooked up immediately to a liter of fluids. He hadn't eaten for at least 72 hours, and I mean anything. He had also thrown up twice in that same 72 hours, so there was nothing in his body besides the chemo fluids and maybe a couple of cans of ginger ale. In one week, he had lost 10 pounds. From Monday to yesterday he had lost 6 of those pounds. It was discouraging for him, after all that work to get the weight back on. The physicians assistant told Mark and I that he needed to try and eat (force himself to eat even though he feels like he's going to lose it any second). If he couldn't then he should get a feeding tube inserted. His body is starving. He opted to try and eat. He did pretty good. If he can keep it up today, then I think we can avoid the feeding tube.

Tuesday, June 6, 2006

I wanted to let everyone know that from May 22 through June 3, if you emailed us through the email link on this website, we didn't get it. Our sweet brother-in-law, Rick, got right on it and we're up and running again. I wanted you to know, because I'd hate it if I missed responding to an email that I just didn't get.

Mark is really sick. We are not sure what's going on. He doesn't have a fever, but he's very nauseas, has a lot of pain and his head hurts. This had started on Saturday, so it can't be related to chemo. This is almost the worst I've seen him. He slept most of yesterday. He slept until about 12:30 or 1:00 pm today. Went up for chemo. Got straight in bed when he got home, and he's still sleeping now. I hope he can get feeling better. They didn't see anything wrong with his blood counts yesterday, so they went ahead with chemo.

They weren't able to give him all four drugs yesterday or he would have been there until 7:30 pm. He got the Erbitux and the Avastin plus some fluids and other meds to help with side effects. He went back today for the Irinotecan and the 5FU. The 5FU is given over 48 hours so he came home with a little pack that is connected to his port and slowly drips the meds in his body. They'll take it out on Thursday, and he might get more fluids if he's still this bad off. He'll receive Erbitux every week, and the other 3 every other week.

Even though these results seem bad. We are still hopeful. The doctor was pleased that the scan wasn't worse than it was. He was happy that Mark was able to tolerate the first chemo regimen as long as he did. We all knew that we would have to change chemo at some point, so that time is now. Like the doctor said, we took three steps forward and one step back over the last 7 months. We're just going to be optimistic that we can take 3 or more steps forward again.

I know that our Heavenly Father is mindful of our pains and that he is carrying us through this difficult time. I send my own prayer out to all those who are dealing with cancer. We must be strong. We must have faith. We are not alone!

Monday, June 5, 2006

So - the cruel reality of CANCER hits like a brick wall. The CT showed as many as 20 new tumors in the liver, the biggest being about 1cm. It still may be true that the biggest tumor in the liver is not active (dying), but the new ones they could see definitely had activity on the PET/CT. The omentum looked thicker on the CT and it looked like there was more activity on the PET/CT compared to the last one.

What does it mean? It means that the chemo regimen Mark has been on has done all it can in the fight. It lasted as long or longer than the doctor thought it would. Now we move on to the next set of drugs which will be Erbitux, Irinotecan, 5FU and we'll keep the Avastin going as well. The doctor says the side effects of this new chemotherapy should not be as bad. They are generally well tolerated. Although, I read on one of the other Cholangio patients blog sites that they were told the same thing, and things were still bad for them. He can expect a rash from the Erbitux. They say if it's a real bad rash then that means it's working. So, crazy as it may sound, pray for a real bad rash:) The Avastin gives him the hiccups like crazy for a few days. I mean like non-stop. I feel so bad for him. They go all night and make it hard for him to sleep. The doctor also said that he could get mouth sores. We were hoping to clear up the mouth, so he could get back to eating the spicy foods he loves.

Unfortunately, he's feeling really horrible today. We're not sure if it's cancer related or if he might have caught something. Patrick, Lucas and I have all had something, so it could be that. I'll just say when he feels like he does today, it is awfully hard for him and for me to keep any kind of positive attitude going.

Sunday, June 4, 2006

We had a great trip to Beaver for Memorial Weekend. However, being at a cemetary certainly felt different this time for Mark and I. He's been feeling really good over the last few weeks. He had the PET and the CT scan on Wednesday. We see the doctor tomorrow to find out what is going on with all the tumors. Hopefully it's good news.