Wednesday, November 30, 2005

November 30, 2005

I just read Marianne's post and I am afraid this may contradict a little. My pain is actually fairly severe right now. The surgery pain is slight but the pain and nausea from the tumors is intensifying. Chase is reading this over my shoulder and said that hopefully the chemotherapy will help with the pain. I agree.

Marianne and I are going to a class tonight to learn about chemotherapy and I will start chemotherapy in the morning. The good news is that the side effects from the chemotherapy treatment for my type of cancer are supposedly small. The bad news is that chemotherapy is rarely effective. We remain very hopeful and are choosing to ignore the statistics.

On Monday I will have another CT scan to measure the size of the tumors to establish a baseline for the chemotherapy. I am interested to see how fast the tumors are growing. Maybe this scan will give us some idea about how long I have had cancer.

Thank you for all the prayers and support. Keep them coming. No matter the result of the surgery, we have always understood that the hope for a positive overall outcome would rest on the effectiveness of chemotherapy. Now is the time for a miracle.

Marianne, Patrick, Chase, Tessa and Lucas are all doing well.

Saturday, November 26, 2005

November 26, 2005

Sorry to leave you all hanging. Mark has been doing great for the last two days. Pain seems to be under control. Nauseau is basically gone. He just has to be able to do one more thing or they won't let him leave the hospital. He is getting very bored just sitting there and still only having a liquid diet. He is getting used to being waited on, and I think he's hoping that will continue at home. (I guess he deserves to still get pampered.)

We hope to be home on Monday. We miss our kids, family, friends and home. We are ready for the next uphill battle and we are going to face it head on!

Wednesday, November 23, 2005

November 23, 2005

We hoped for a different outcome, but we knew this could be a possibility. We are trying to pick our spirits back up to start the fight with chemo now. Like my dad said, at least we can start chemo and feel that we turned over all the "rocks" first. They were able to take tissue from the cancer that we will be having analyzed at T-Gen. They try and track the way the cancer grows and what can stop it and shrink it. It's very new and they are having great success. So maybe that's where our miracle will come. Each new "up" seems to come with a "down," but we are so buoyed by all of you and your love and prayers that it gives us the strength to keep pressing forward.

Mark is having quite a bit of pain, and we are not sure if it's related to the surgery or if it's just the cancer. Please pray for him today.

Our love to you all.

Tuesday, November 22, 2005

November 22, 2005 (Update)

I've received several calls tonight, and I thought I would pass along the results of Mark's surgery.

After they opened him up, they discovered that the cancer had just spread too far. They closed him back up and he is recovering now.

As soon as I get more information I will post it.

November 22, 2005

Another change in plans!

Mark's surgery has been rescheduled for TODAY! So, keep Mark in your hearts and minds!

We'll post more information as we get it.

Monday, November 21, 2005

November 21, 2005

Well, small change of plans. We arrived yesterday (Sunday) and all was going great. This morning, however, we received a call from the clinic here that we would not be having surgery on Tuesday now. They had a liver donor available for someone who was awaiting a transplant. With everyone coming we were still wanting to have the surgery Tuesday if we could. The doctors said OK, but then Mark and I started to think about what would be the best thing for Mark. We would have been the tail end surgery at the end of a long day on Tuesday or we would be the only case starting on Wednesday. So there you have it. Surgery is now postponed one more day, and we feel good about having doctors who are starting off fresh with Mark.

Mark hasn't been feeling great this morning, but we think it's just due to the stuff he was supposed to drink to clean him out before surgery. It made him very sick to his stomach.

The place we are staying is very close to the medical center and it feels very homey and peaceful.

We love you all so much. Thank you for your prayers and sweet words of encouragement. I'll post again on Wednesday evening after we know how the surgery went.

Sunday, November 20, 2005

November 20, 2005

Marianne and I will be leaving for California in a few hours. The Stake Presidency is coming over this morning to give me a blessing and then later some of my family will come by.

I wake up at about 2:00 a.m. each morning and go in and out of sleep for a few hours until about 8:00 a.m. I am not sure why that is my pattern but I seem to be getting enough rest. It does give me time to ponder. This morning I was trying to decide what emotion I am predominantly feeling. I think it is generally calmness. I am ready to start the battle. For the past month my family members and others have been working hard to gather information and research treatments, facilities and doctors. It is now time for me to do my part. I have much faith in the Lord and I truly believe that by trusting in Him, all will be well. I do trust in Him completely.

With the generous help of my friend Ken Margetts and others at Bennett, Tueller, Johnson & Deere, Marianne and I got all of our personal and family affairs in order this week. Lawyers put that stuff off just like everyone else. That also brings me calmness.

My heart does ache about being away from my children for so long. I will miss spending Thanksgiving with them and the rest of the family.

I report to the clinic for some blood work Monday morning and then call the hospital around 2:00 p.m. to see what time I need to show up for surgery. That is about all I know at this point.

Wednesday, November 16, 2005

November 16, 2005

Dr. Bussatil, Dr. Hong and the other surgeons at UCLA called on Monday and said that they want to do the surgery. They believe they can debulk the tumors in a significant enough way that my pain will be greatly reduced. They will not know how severe things are until they open me up. There is a very, very small chance of getting out everything but most certainly I will still need chemotherapy to work after the surgery. Every surgeon and oncologist, even those who advised against surgery, counseled me that a positive attitude, good nutrition and exercise were the three best ways to battle a cancer like mine. Right now the tumors in my liver and abdomen are so painful that it is difficult if not impossible for me to do these three things. My feeling is that if the surgery does nothing more than relieve the pain, I will be able to do these things and give the chemotherapy a better chance to work.

Marianne and I will leave for U.C.L.A. on Sunday. My dad and mom and three sisters will arrive on Monday. I am even hearing that Demetrious may show up. The support is wonderful. Marianne's parents will take care of our children over the Thanksgiving holiday. The surgery will be on Tuesday November 22 and will should be back in SLC on the 30th. My sister Kelley is going to stay with us the entire time to help with Lucas.

Pray for us.

Monday, November 14, 2005

November 14, 2005

On Friday we met with Dr. Mulvahill at Huntsman. He is a leading liver surgeon and did not review my case the first time it was presented at Huntsman. He said that surgery was not an option in my case at this time because the cancer had spread to far. He recommends that I start chemotherapy immediately and then consider surgery later if the tumors shrink. Dr. Whisenant has suggested the same course of treatment.

We were planning on going to Scottsdale this week but decided to cancel the trip. We have gathered a lot of information and now need to hear from MD Anderson and a couple of other clinics that do a significant amount of work specifically with my type of cancer. We are in constant contact with these hospitals and will hear final opinions this week.

Currently I am scheduled for a CT scan on Thursday to determine whether the tumors are growing. Because we cancelled the trip, we are trying to move the CT scan forward.

The biggest struggle I am facing right now is trying to eat enough. I am battling fairly significant pain and nausea as well as the side effects of pain medication. The pain and nausea increase when I eat. I am getting closer to figuring out a routine of eating many small, nutritional meals a day.

Lucas has been a great addition to our family. He is very happy.

Thursday, November 10, 2005

Nov. 10, 2005

This is Marianne -
I'm sorry I just haven't felt like sitting at the computer before now. Today Lucas is one week old. He has been an amazing baby.
Details - 7lbs 11ozs and 20 inches

The doctor broke my water at 10:00 am and at 11:45 they said it was time. I pushed 3 times for each 2 contractions and he was here at 12:01 pm on November 3, 2005.

This is Mark -
It is good to be home. There is something surreal about traveling to a new place to visit with a doctor whom you know nothing about so that you can determine, after a 15 minute meeting, whether you will trust your life to him or her.

My dad and sister Stacie went with me. We met with a surgeon and an oncologist. The initial reaction was the same as we have received from all the medical personnel -- surprise over the size and spread of the tumors. The oncologist was blunt in telling us that surgery was not an option in his opinion but he was somewhat more positive than others about chemotherapy. The surgeon said he would not recommend surgery for the normal patient (60+ years old) but that he would consider surgery for someone my age. When we asked him what he would do if he were in my situation, he said that he would have surgery. He told us he wanted to meet with a colleague before rendering an opinion but that he thought we should be aggressive. He said that my overall health was such that I could tolerate the surgery better than most which made it more of an option. We should hear back tomorrow.

It was a hard trip for me. There are many nerves in the areas where my tumors are located and the pain is increasing. The pain medication has side effects that result in more pressure on my abdomen and sometimes nausea. I never feel hungry and my stomach seems to fill quickly when I eat. I have lost good amount of weight. Over the next two days I will be meeting with doctors so that I can get back to feeling good. I feel confident that will happen soon.

On Friday we meet with a surgeon at Huntsman and we go to Scottsdale next Tuesday. Stacie, Demetrious, Brad and many others are researching and making additional contacts with specialists. Dr. Whisenant, my oncologist, continues to be very helpful.

I changed a diaper this morning for the first time in five years. I was rusty and Lucas knew it. Suffice it to say that I needed to shower by the time I was finished and he needed a complete change of clothes. He and the other children are doing well. Marianne is emotionally up and down a little as should be expected for a new mother. She is an amazing mother. Her parents are still here taking care of us. Louise takes care of Lucas and keeps the house running and Dale has spent many, many hours in our yard getting it in shape for winter. My mother is spoiling Chase and Tessa while they are off track from school.

Monday, November 07, 2005

November 7, 2005

Things have been a little hectic the last few days. We are so grateful to have Lucas here and also grateful that he is healthy and happy. Marianne's parents and sister Diane have been here running our home and parenting our children and making it possible for us to enjoy Lucas. We could not have done this without them.

A new baby in the home certainly changes things. It is nice to wake up in the morning and have my first thoughts be of something other than cancer. Lucas is an amazing blessing to our family.

I will discuss my upcoming week and then let Marianne write about Lucas in a separate post.

My family and friends have been working non-stop to find the best treatment options for me. I will be in San Francisco tomorrow at UCSF and in Los Angeles at UCLA on Wednesday. We have been in regular contact with a group of doctors in Scottsdale, Arizona and with the folks at MD Anderson in Houston. We are gathering information on other places and we may make a few additional visits over the next ten days if necessary. I am amazed at the effort, organization and communication of those working on my behalf. Many of you who follow this website have sent valuable information. I can assure you that someone has followed up on the information. My local ongologist, Dr. Whisnant, has also been very responsive and helpful. I appreciate everything he is doing for me.

I feel so blessed and fortunate to have such a tremendous support system. If something can be done to help, we will find it. In the quiet times I think and pray for those who must face trials like this without the support of family and friends.

I have many close friends who deserve much more from me than a general response. For reasons that I do not fully understand, I have been unable to pick up the telephone and make those calls. I think part of the reason is that we still have such limited information and I would rather talk about treatment and solutions than diagnosis and doom. Again, I very much appreciate all of the continuing support.

Wednesday, November 02, 2005

November 2, 2005

Chase, Tessa and I spent most of the day gathering my medical records from various hospitals. Grandpa Ray joined us for some of the time. My sisters overnighted the records to MD Anderson in Houston; we should hear back next week. We have received a lot of positive information about MD Anderson. My law school friend Demetrious who now lives in Houston and my sisters have been researching and making telephone calls arranging for MD Anderson to review my case. We have heard they are currently treating 41 patients with cholangiocarcinoma.

Marianne spent the day with family and friends at a baby shower arranged by Kristie King and many others. It was exactly what Marianne needed. Her parents arrived at our home a few hours ago and her sister Diane will be here in a few minutes. We are very blessed to have two wonderful families in our lives. I cannot imagine what it would be like to go through an experience like this without family.

Marianne is all packed and ready to go to the hospital. We are both ready to concentrate on something other than cancer for a few days. The kids are also excited and have been incredibly helpful to us. I wonder if I will sleep tonight.

Tuesday, November 01, 2005

November 1, 2005 (2)

The surgeons at Huntsman won't do the surgery because they say my cancer has spread too far. We are going to gather my medical records from Huntsman tomorrow and take them out of state in search of a hospital and surgeon willing to take a chance.

Marianne is doing well. We are going to have the baby on Thursday morning. I am very excited to hold our son.

Tuesday, Nov. 1, 2005

Well good news is, the baby still hasn't come. I was having braxton hicks (sp?) all day yesterday, and it sure felt like something was happening. Things seem fine today. I was on my feet and running errands all day yesterday. I think I'll take it easy today.

Mark and I are both anxiously awaiting to hear what happens at the tumor board up at the Huntsman Cancer Institute this morning. His case is being presented today. The waiting is the hardest part. Everyday we want to be doing something. Hopefully there will be some specific ideas as to the direction we take. We know, however, that the course we take will ultimately be up to us and that's when we'll need Heavenly Father's help.

We love you all and truly appreciate all your prayers and well wishes. We love this site too. We look forward to reading each new post and email. It lifts our spirits to feel all of your love for Mark and I and our family. Bless you all. We love you.