Tuesday, December 27, 2005

Open House

Clements Family Open House
Thursday, December 29, 4:00-8:00pm
We do need to ask that if
you have been sick or feel like you
are coming down with anything,
please do not come at this time.
Mark's immune system is
compromised because of the chemo and we want
to be careful with Lucas as well. We are looking forward to seeing our good friends who have encouraged us so much over the past months.

Monday, December 26, 2005

December 26, 2005

Merry Christmas from the Clements Family

We had a wonderful day, and we are looking forward to a wonderful week.

We are going to have an OPEN HOUSE on Thursday the 29th from 4-8 pm. Originally we had asked that it be adults only, but we have changed our minds. There are so many of you with children who have been so concerned about Mark and praying for him. We felt that it would do them and us good to see each other. We know many of you would also like to see Lucas. We look forward to seeing any and all who might be able to come that day.

Sunday, December 25, 2005

December 25, 2005

I have been up since about 3:00 a.m. This is probably the first time in many years that I have been awake before the kids. They hopefully have at least another 30 minutes of sleep. I am actually quite excited to start because I have a very special present for Marianne -- one that is long past due. I have wanted to give it to her for several years but, like many things of a bigger magnitude, it was easy to put off. Not anymore. I might wake up the kids.

I wanted to let you know that this is definitely a "jeans" day for me although this morning I am wearing new, wonderful sweats that I kindly received in the mail yesterday from a friend from many years past together with a letter and scripture. Thanks to him and his family. I am also grateful that later this morning I will be able to put on a suit and a tie and go to sacrament services to partake of the sacrament and celebrate the birth of our Lord and Savior Jesus Christ. He has blessed my family and me by making my chemo side effects so light this time. I am so thankful to Him.

Cancer talk can wait for another day, but I did want to say that I received my Christmas present on Friday when we received the best news we have heard since first learning of the cancer. It has brought us tremendous renewed hope and determination to continue this battle. We will share soon.

Merry Christmas.

Saturday, December 24, 2005

December 24, 2005

I met with Dr. Whisenant on Thursday and he was much happier to see my condition. I have added five pounds and simply look and feel healthier. He poked around my liver for a few minutes without saying much; we spent the remainder of the visit talking about the slightly altered chemo I would be taking and the new drug that was approved. I left the appointment feeling upbeat.

My sister Stacie, my Dad and my oldest son Patrick came to the appointment and the chemo. It was nice to have them with me. The chemo lasted nearly three hours -- anti-nausea drug, Gemzar and Avastin.

I went back to the clinic yesterday to finish with a steroid injection and the Oxaliplatin. Two of my friends Mark James and Mark Richards visited with me. Marianne brought Lucas over at the end to show him to our friends comprised of the nurses and other patients.

The Oxaliplatin has a weird side effect. It brings on an extreme cold to your extremities. After the treatment, I ran to the grocery store to get a few things for a family party later in the evening. I was stacking up bags of frozen potato in my arms when I was overcome with an intense burning/slash freezing feeling which caused me to drop the bags. Someone helped me the rest of the way (although I bought the wrong bags of frozen potato, requiring Patrick and my dad to exchange them later.) Serves me right for being cocky. I was careful the rest of the day.

I feel good this morning and I am looking forward to feeling good on Christmas Sunday. Marianne and I want to wish a very Merry Christmas to our many friends and supporters. Thanks again for everything.

Wednesday, December 21, 2005

December 21, 2005

We received great news yesterday. Although the details are not entirely clear to us, the insurance company has apparently approved the use of the drug Avastin in my treatment. We are not sure how this happened so quickly or exactly why it happened at all but it is a tremendous blessing and potentially a major step forward in my treatment. There is good evidence that Avastin can significantly enhance for some patients the effect of the chemo treatment I am currently taking.

As a result, Dr. Whisenant has moved my chemo treatment up one day and spilt it into two sessions to add the Avastin. I will now be in chemo Thursday morning of this week and then again on Friday morning. We will meet with Dr. Whisenant on Thursday before treatment and have him give us all the details. We appreciate how he is leading our team and we have much confidence in him. Having Avastin approved so quickly allows me to jump forward almost a month in my treatment.

Thanks so much for all the prayers and effort on this issue. Good things are happening.

Monday, December 19, 2005

December 19, 2005

The good days are stacking up now. Yesterday, I went to church and ordained Chase a deacon. It was neat for our family. Marianne made me some kind of funky juice with apple, celery, tomato and other stuff and I actually drank it. My body did not give up with the sudden introduction of so many fresh vegetables.

Today, Chase is the lead in his school play. I am excited to go to an event and not feel guilty because I should be at work billing hours. That alone is good mental therapy for beating cancer.

My larger family met last night and continue to work hard for our family. They are so organized and all come through with what we need. I am convinced that the outcome of this battle will not rest on a lack of effort or strategy. Those around me are too strong and smart. Kelley has been diligently tracking down those with cholangiocarcinoma and has found some getting good results from new treatments. Stacie also been working closely with another family (39 year old mother) battling the exact same cancer on nearly an identical time frame. That family is incredibly close to one another and extremely determined. They have been and will continue to be an incredible source of strength and knowledge to us. (apparently, Stacie heard last night from a doctor meeting with this family that occurrences of cholangiocarcinoma have risen over 150% in the past ten years. Walter Payton had this type of cancer and died at 43. The doctor said that there have been several advances since then and much more to come.)

Today I have the stitches removed from my chest port and will meet briefly with doctors about my new drug regimine. I will be in chemo early Friday morning.

Saturday, December 17, 2005

December 17, 2005

My life has somewhat boiled down to this -- is it a jeans and jogging shoes day or a sweats and slippers day. That is kind of the thing with cholangiocarcinoma. It has a few bad things about it. First, it is hard to detect so often it is advanced when it is first noticed. That is the case with me.

The second problem is that it has side effects that have nothing to do with chemo. First, there are many nerves in the liver and abdomen and the tumors push against my nerves. My pain is getting much better, thankfully. I have not had any breakthrough pain for several days. Maybe the chemo is working a little bit or maybe my surgery is just healing. Either way, I feel better pain wise than I did since first hearing the word cholangeocarcinoma. Cutting way back on pain medication has also allowed me to talk a little quicker and accomplish much more.

The second side effect is nausea that comes from the liver. There is not really any medication for this which is unfortunate. That is what really leads to the sweats/jeans decision. Since my second chemo medicine left my body, I have only had one nausea day. My mom was the unfortunate victim. She came over to help with Christmas shopping and Lucas and just to hang out. About as she walked in the door, I hit the sink. I told her it was nothing personal. We hung out together for the morning watching Ellen and Tony, which appear to be the exact same show -- one with a gay host and one straight. Ellen does give better gifts and have better guests, apparently. I enjoyed my mom's company. I mostly paced the room while we visited.

The rest of the day slowly improved. I guess that is the key. Be happy for every good day and have as many as possible and not get too low on the bad days. I was hoping that the nausea would go away with the pain to maybe suggest that the chemo was working. I do feel good this morning so maybe the nausea is less. We will see what happens in the morning. I am anxious to go to church so that Chase can become a Deacon. I think I will feel good tomorrow.

As many of you know, I am halfway through my first cycle of chemo -- two weeks of treatment, a week off and then two more weeks of a slightly different treatment. The change is small but may help with the side effects. Once I finish the next two weeks, we will test again to see if it has made a difference. If it has, you will all know and we will all be happy because it is working. If it does not work, we will push hard to get the insurance company to approve some new drugs that are showing promise in treatments for closely related cancers -- one is called Avastin. This drug raises the percentages that my other treatment will be more successful. It will take some effort but the new drugs will help. Anyone who knows any way to help me get Regence Blue Cross/Blue Shield to approve Avastin in Utah for my treatment please let me know. We are going to need to lobby hard. I also have a friend and neighbor in my ward who works for the company that makes this and another great drug. He has offered to help which is great. If these drugs have worked for some -- should not they work for a person in good health who just ran a marathon?

What else am I doing? First, I am starting back with exercise. I love to do this and it has been part of my life for a long time. Research shows that it will help with the nausea, the chemo side effects and the efficacy of the treatments. Christmas time and a new baby make this a little bit of a hard time to get back rolling on exercise, but then cancer comes when it wants it seems. When Lucas feels good and sleeps well, Marianne will too. Being at home helps me to understand that they have good days and bad days like me. We need to make sure they have many more good days then bad. It is happenning.

I also need to eat healthy. This will not be as easy. I have not been a health food guy, but then again cancer is a good incentive to change life style a little. My family is helping me with this. We are going to buy a juicer today and I will have to replace a good sandwich with some green beverage that slinks down. There is reaserch to uncover but nothing new to invent. Many people have had cancer before me and have tested what needs to be done. My family will find what I need to do from the knowledge available and I will follow it. Of course, there is the old problem that cholangiocarcinomo is not as well known as other cancers so the information and reasearch is harder to locate.

I have confidence in Kelley, Stacie, Amy and my mom that they will get it done for us. Every step of the way they have performed perfectly. They do whatever it takes which makes Marianne and I anxious to do our part. We will. My dad has also been a strength along with Marianne's family.

Yesterday was a good day. I woke up feeling really good, put my jeans on and cleaned the house a little with Marianne. This is good exercise for me and keeps my mind moving. (I did miss Ellen.) Lucas was a little ill but he hung in there. Anne Kitchen came by to see Marianne and I for a minute and helped with Lucas. She is married to a friend I made when I was four. We wandered off and got lost. Our parents found us with the police later that night. Our parents met for the first time and became friends. Our families moved to Pleasant Grove, Utah together because of that day. Anne drove me down to Brad's office and we had a good visit. He is going to help me get back in the gym.

We rescheduled my family birthday party for last night. When I was young, we used to have hot oil fundue as a family. At my request, we tried to recreate the old days. It was great. My family was all able to come together with Marianne's brother Bruce and wife Lisa. Everybody pulled off their assignment with precision. The house does wreak of hot oil, however. At the end of the night, Geret had written a rap song and my sisters and brothers-in-law performed in front of the camera. Internet access coming soon. Let's just say that if I do lose my hair, which is not clear at this point (I have a few more days to find out), I now have several hats (think Kramer in the Seinfeld "Pimp" episode) and wigs (Trump, Napolean Dynamite).

I guess it is mostly time to enjoy Christmas and dig in for the long fight. We are ready. Our family is in a good place. The children are working hard to do their part without effort from us. All three have stepped up in school and at home. It makes me feel good. That is what families are supposed to do. Cancer has helped encourage them but they were already great children and already so close to where we wanted them to be. I guess the simple lesson is that sometimes it has too happen to us pesonally before we really examine our lives. Some tell me that this Website and what has happenned to us has helped them evaluate there lives. That's a good thing. It is now our time to work hard to get a second chance at life so that we can get the value of a good lesson. Life really is as simple as God and others have told us for so long. What will it take for each of us to truly decide how we will live. I know you have heard it all before and now maybe I am just preaching.

As I have mentioned many times before. The little favors matter so much. The beautiful, warm quilt that appeared in the mail one day, the many great meals from friends and neighbors, the neighbor who came by one morning with air filters for our home, the friends that have brought littles things we needed from the store, those who watch and care for our children, the constant caring and attention from our families and the many posts and thoughts on this site. It amazes me how everyone knows how to act and what to do in these situations.

Maybe this will bore some of you, but my life has happily become more boring as we focus on this immense task of beating cancer. I asked Marianne yesterday if I say or do more or fewer stupid things post cancer. She didn't really answer. I think it might be more. Last night I was driving the car home and realized that I did not even now what the speed limit was on several of the roads around Draper. I probably need to issue a general apology to the driving public of the County. We will keep you posted.

Tuesday, December 13, 2005

December 13, 2005

Well, the chemo didn't affect Mark the same way the second time around.

Thursday he had the port inserted, an appointment with Dr. Whisenant then the chemo treatment. It started at 7:15am and he didn't get home until around 6:00 pm. He was nauseated most of the day.

Friday he was still sick, but had to drink the chalk smoothie before the CT scan, and because he was still sick they had him come in for more fluids and nausea meds through an IV.

Saturday started off hopeful that the nausea was going away, but those hopes were dashed as the day wore on.

Sunday was by far the worst day he has had so far. It's possible some of the meds he was taking to help curb the nausea were making him very jittery and anxious. It was a very hard day for all of us.

Monday he seemed to be on an upswing. He had an appointment to have the stitches for the port checked and then to go in for IV fluids and more anti-nausea medication (this was for just in case). He ended up not needing either because he had been getting enough fluids. His blood work was looking real good too which made Mark feel better about his overall health. He was feeling good enough when he got home that we were able to spend some time together for Family Night.

Today, Tuesday, he was already feeling good enough last night that he told me to be ready to GO today and get things done. We did just that. He ran some errands this morning while I went to my checkup. When I got home we went up to Chase's school to see the 6th grade science projects. They had just finished the judging and Chase's project was one of the few chosen to go on to compete at the district level. (A huge thanks to Aunt Amy for helping Chase get this all put together!) We then went to lunch - YAHOO - and almost finished our christmas shopping. Mark was feeling pretty tired, but he was still wanting to go the movies with the kids when they got home.

We realize that we will just have to make the best of the good days and pray like crazy to have fewer bad days or at least make it through them.

I am going to try and do a better job of updating our site on a daily basis. I know many of you check it often to see if we have written anything new. I know that we check daily to see if there are uplifting thoughts from all of you. We love reading what each and everyone says. Many of you ask what you can do for us. There are not a lot of tasks we need, but your prayers and your posts are so important to us.

We also wanted to give you a heads up. We know that many of you want to come and see Mark and Lucas, so we are hoping one day between Christmas and the New Year to have an Open House Holiday Party. It might be a last minute plan, but we'll just post it on here. We'll have to ask that it be adults only, because Mark and Lucas both need to be very careful about germs.

We love you all so much. We feel your love and the love of our Heavenly Father and Jesus Christ.

Tuesday, December 06, 2005

December 6, 2005

Perhaps this is too candid, but I am going to share it anyway. Through much pondering, reading and discussion, it probably comes down to this. If one of the following five things happens, my life will be measured in years, if none of the following happen my life will be measured in months:
1. The chemotherapy I am currently taking (the usual regimen given for this somewhat rare form of cancer) will work to shrink the tumors;
2. We will try a different type of chemotherapy that will work; currently, through the very gracious efforts of Dr. Dave Bolluck, Brad Kitchen, and Stacie, there is a team of experts in Arizona that are testing actual biopsies of my tumors with various forms of chemo to see which, if any, treatments prove effective in a laboratory setting. I am in good health and I believe that my body will be able to handle a few different attempts at chemo;
3. We will find success through a natural or alternative treatment. We are looking at different options;
4. There will be advances in medicine. Things are happening quickly right now; or
5. We will experience a miracle.

We are very hopeful as we start with the first of the five listed alternatives.

Chemotherapy is a learning process. Each day has brought something new to deal with. As we handle each day, we are gaining valuable information for the remaining three weeks of treatment under this type of chemo. So far we have learned the following:

The day of treatment (Thursday) is generally a good day. The medicine they give me during treatment takes away the nausea for the night. I need to eat more on Thursday night. This past Thursday I ran into a problem with my pain medications, but that has now been resolved and I think permanently. As the incision from my surgery heals and, hopefully, the chemo works to shrink the tumors, the pain can only get better

On Friday, I felt great. I ate three meals, did some work, and went to a movie. I should have consumed a few more calories which I will do next Friday.

On Saturday, I again felt good although I was tired. I was able to eat during the day and on Saturday evening I went to the Festival of Trees to see Tessa perform in a musical group. Later on, the nausea and fatigue set in and I began to feel the first real effects from chemo. Next Saturday, I will try to consume more calories early in the day and then be prepared with anti-nausea food and drink for the evening.

On Sunday, I was very ill. We went to church to bless Lucas. I barely made it but it was nice to see everyone and to participate in that event. I was unable to eat or drink anything on Sunday. It was a tough day.

On Monday, I again felt very ill. I was scheduled to go in for a CT scan but could not do it. Marianne and her dad were watching me closely and determined that I was dehydrated. Marianne took me to the clinic and they could tell things were off right away. They immediately gave me some anti-nausea medicine and two large bags of fluids. I felt much, much better after the treatment.

Today I feel really good.

We are going to change things for this next week. On Thursday morning, I will go to the hospital and have a port inserted. This will allow me to get IV fluid treatment at home on Sunday. I will then plan on going into the clinic every Monday for the same anti-nausea treatment and 1 bag of fluids. This will really help get through the tough days of the cycle.

I will have chemo again on Thursday. On Friday they will take a CT scan of the tumors to set a baseline. This round of treatment will be five weeks. Chemo for two weeks, one week off and then chemo for two more weeks. At the end of the five weeks, they will take a second CT scan to see if the chemo has worked.

I hope this is not too boring, but it is our reality.

Our family is otherwise doing well. We remain so grateful for the support of our friends and family. We feel very blessed.

Friday, December 02, 2005

December 2, 2005

Chemotherapy class was a drag. I think they feel compelled (probably by lawyers) to give you the worst case scenario for your treatment. While the doctor told us that my regimen (Gemzar and Cisplatin) would be light with minor side effects, the nurse teaching the class said that I would basically get it all. She said that she was going to take my hair for sure and that I would have pretty significant fatigue and nausea. She said that I would also experience many of the other common side effects. I have a feeling that the nurse probably knows more than the doctor on this issue.

Chemotherapy was not too bad. It took nearly five hours. My mom and Marianne came with me which was nice. They take you into a large room where you select a recliner. The nurse inserts an IV and the treatments come one after another. They first gave me anti-nausea treatment and then a magnesium/potassium supplement. This took over two hours. Then they gave me the regimen. The process is painless (at least as long as the IV goes in easily). I took a nap, visited with my family and read a magazine. The other patients around me became aware quite soon that this was my first treatment. They had lots of friendly advice about nutrition and the types of toothpaste, deodorant and lotion that work with the side effects.

Although I am still a novice, the process of chemotherapy sends chemicals into the body that destroy all fast reproducing cells. This includes cancer cells as well as hair follicles and the cells in the mouth and lining of the esophogus tract and sometimes skin. For this reason patients often lose hair and develop sores in the mouth as well as nausea.

After the treatment I was a little tired but overall I felt fine. I ate dinner with my family but then started to feel a significant increase in pain. I am on so many drugs, including pain medications for the tumors and surgery, nausea medications and medications to treat the side effects of pain medication, but I am finally beginning to have an understanding of when things are going right or wrong. Last night the pain medications were not working well and I began to get nervous. Because of the surgery and the tumors, I am only able to sleep flat on my back. I am not used to this and it makes sleeping difficult.

By about 11:00 p.m. I knew that things were way off. Marianne helped me make a few decisions on medications. I was also feeling some nausea from the chemotherapy which did not help. By about 1:00 a.m. I was a mess and I decided to put it in the hands of the Lord to get me through the night. I fell asleep shortly thereafter and woke up sleeping on my side with no pain. I needed Him at that moment and He was there. I am so grateful.

I feel very good today so we have decided to bless Lucas in church on Sunday. If I feel half as good on Sunday I will be fine. Thanks again for all the support.