Thursday, October 29, 2009

Oct 29

Hello again. We went to the Cancer Center this morning as usual. Mark started vomiting this morning just thinking about going. We went ahead and had his CEA drawn. His magnesium came back low, so they started his magnesium infusion. His CEA level came back next and was much higher at 370. His previous reading was 240. It has really escalated on this regimen. Mark and I talked and decided that he shouldn't have this chemo today. I think it is just torture to put him through this when it doesn't appear to be working at all. He is miserable with the chemo-fatigue, nausea and vomiting and only the last 2 days of this cycle has been able to eat worth anything. Mark was in total agreement. We talked with Dr. Farmer. The problem is there is only one other approved chemo regimen that Mark hasn't tried and it is called Vectibix (?sp). It is almost identical to the Erbitux, but is fully humanized instead of using a mouse protein and he wouldn't have to take the Camptosar with it (which probably causes a lot of the nausea and vomiting and cramping). It is doubtful that it will be effective since the Erbitux wasn't. We both feel like we want to try the FOLFOX regimen one more time. This is the first regimen Mark was on when he was diangnosed. It worked for a long time and only stopped working when Mark developed the leukovorin allergy. He has been off of it for quite some time and his cancer may respond again. Dr. Farmer is doubtful, but said she would try it again if we really wanted to. She talked with us again about hospice.

Mark's weight was officially 162 which is down from his previous 168 at the infusion center. He did get it up a few pounds from what he lost at home from the last round of chemo. He is getting more pain and that is most likely from the cancer spreading in the abdomen. It makes it hard for him to eat as it covers most of the intestines and his pain now radiates into his back. The pain patches help a lot and he has pills for breakthrough pain. We haven't given up hope and Mark intends to try the rest of the chemo regimens as he is definitely a fighter. We will see what happens.

The kids will trick or treat tonight, so maybe Mark will feel like going out for a little bit now. If not, he may enjoy seeing some of the trick or treaters we get at the house.

Thanks to everyone for all of the support. Please continue to pray for Mark. God bless!!!

Wednesday, October 28, 2009

Oct 28

Hello. Mark is feeling better just in time to get back for another chemo infusion. He has had two pretty decent days. He is trying like crazy to make up the calories and get in what he can. His weight on our home scale was down to 160 a couple of days ago after all of the sickness and inability to eat, he really lost a lot. Hopefully he has been able to put some of that back on. He is eating everything he can possibly get in. Calen was impressed with the amount he ate at dinner tonight. We hope it is enough to keep the chemo schedule on track.

Tomorrow morning Mark is scheduled for his last chemo in this cycle. He will get a two week break after this and we are all looking forward to that. We may move the chemo back to Mondays as that was his preferred day before so his feel good days would be on the weekends when he could do more with the family. It just makes sense. He wasn't happy about the kids doing trick or treat tomorrow night and he probably will miss it all.

Mark had a good visit today at lunch with Lee and Keven. He also enjoyed dinner last night with Andy. He has enjoyed having a little company when he is feeling better. It is nice to see him engaging in work conversations and talking spots, etc again.

Our sad news today is our guinea pig, Leppy, died this morning. I was driving her to the vet as she was having a hard time standing up and was very weak and she died in my lap on the way there. It was so sad. I pulled off the road and just cried. We had to tell the kids this evening. The guinea pig was more of Colton's pet as she stayed in his room and he was there the night she was born. He is very attached. He took it hard. We had to bury her and find a stone for her grave marker. Colton wanted to get out all of his pictures of him and Leppy and put them on his bulletin board. He cried for an hour before going to bed. It just breaks my heart.

Emily has a field trip to the pumpkin patch tomorrow and is very excited. She says she is going to pick out the biggest pumpkin they have. We will see. Calen is staying busy with sports and school. He has been working really hard this week. The kids made a Halloween cake tonight with their grandparents. It was chocolate cake with orange icing. They put edible ghosts, pumpkins, worms, and spiders on the cake as well as some nonedible "scary" spiders. This was Emily's doing. She thought up everything she wanted on a Halloween cake and her granny and granddad went out and bought the stuff. They had fun doing it and it took some of the stress of Leppy dying away. It was a good night to make cake.

Thanks to everyone for the continued support. We pray for strength each day to get through this and to find God's message in all that we face. We've become better listeners for sure. Please continue to pray for Mark. Please remember Carly Parker as well as all those battling cancer. God bless!!!!!

Sunday, October 25, 2009

Oct 25

Hell to all. Sorry I haven't posted in a few days. It's been busy. Mark has been quite sick with this round of chemo. He did okay Thursday, but Friday he began vomiting and was up all night Friday night with violent vomiting episodes. This didn't stop until early Saturday morning and he finally was able to fall asleep and rest. Needless to say, he hasn't eaten much this weekend and is WAY down on his calorie intake. He is slowly starting to feel better, but still even today hasn't eaten much at all.

Mark's aunts from New Orleans, Aunt Maureen and Aunt Louise, made it here Friday for a visit. They came bearing gifts of shrimp po boys, muffalattas, and king cake. YUM!!!! We enjoyed great food all weekend. Mark was disappointed that he wasn't feeling better and only spent a limited amount of time visiting with them. It was a really rough weekend for him and he is just this evening starting to feel better. The kids enjoyed the weekend and Emily talked everyone's ear off. We went to mass this morning and had lunch and Louise and Maureen headed back home this afternoon. The kids are now looking forward to Mardi Gras as they want to go to New Orleans to visit their aunts and see the parades.

Colton kept us busy with football make up games and a baseball tournament. His football team lost, but the baseball team won the tournament. That was their last tournament for the fall season and we will now get a breather until spring.

Thanks for all the support once again. Please keep Carly Parker in your prayers as well. God bless!!!!!

Thursday, October 22, 2009

Oct 22

Hello to everyone. We are here in the infusion center about to be finished with Mark's chemo. He is doing well. They were going to draw a CEA today, but Mark refused it and said he didn't want it to be done. He is so stubborn. He wants to wait until next week at his 4th infusion. arghhhhh!!!!! I did not say anything. I just smiled at his nurse and kept my mouth shut for it is his body and his cancer and I am just the wife and supporter. That was hard to do, but I thought I did an awfully good job today since inside I wanted to pinch him or scream at him. Anyway, we will know in due time. The reality of it is, Mark is doing better and no one can argue with that. He has had a very noticeable improvement over the past few days. Yesterday he asked his parents to go to lunch with him at McAlister's and they had a lunch outing. He also wanted to take a walk outside last night and we walked to the end of the block and back. These are HUGE improvements for Mark as he has pretty much been sitting in a chair all day or sleeping in the bed. His color is better, his pain seems to be less and you can just tell he feels a little better. When we walked into the infusion center today, Andrea (his infusion nurse) right away said he looked much better. His weight was stable at 168. We had hoped for a gain, but the fact that he didn't lose was encouraging.

Tonight is the Jr. High game against Opelika. Mark is hoping that he feels good enough to make the game tonight as it will be Calen's last football game this year. We will see how it goes. We should be finished here just after 3pm.

Thanks to all of you who continue to support us through this journey and have prayed for Mark. We feel very blessed. Casey, thanks so much for the email today. I was cracking up so hard while reading it today. I miss you guys so much!!!!! Please remember Carly Parker in your prayers. She had spots show up on her follow up chest CT and now they are waiting to find out what this means. God bless!!!!!

Monday, October 19, 2009

Oct 19

Hello again. Not much exciting to report from the Bertus household. Mark is continuing to fight. He is tough and hanging in there. I talked with Andrea, his chemo nurse, to confirm his appointment for Thursday and she was asking about him. She was excited to hear about the rash and said that it usually means he is responding to the chemo. It was good to hear. Mark doesn't like the fact that he has acne, but we love it. His biggest challenge now is eating. He cannot find foods that won't cause him to bloat and feel distended and full. He likes to eat his usual diet stuff which probably isn't the best choice as far as that is concerned, but on the other hand, he needs a lot of calories. As you can see, it is frustrating. His pain seems to be a little better, but as soon as I say that, he may relapse and have a bad day. It is hard to predict.

Mark's parents are still here and helping out with the kids and caring for Mark during the day while I am working. That is a big help. His aunts from New Orleans may be up this weekend for a visit and Mark is excited about seeing them. Thursdays chemo will be here again before we know it. Pray that our number is a good one. God bless!!!!

Sunday, October 18, 2009

Oct 18

Hello again. Today has been a good day so far. Mark slept pretty late as he was just tired, but got up and had some breakfast. He seems to be doing a little better this week, so hopefully that's a sign that this chemo is helping. He has developed a pustular acne like rash across his nose and cheeks which is a common side effect of the Erbitux. I read one study which said that the patients who got the rash actually responded better to the drug, so we can hope that this is true.

Mark made it out for Colton's football game Saturday morning and it really did a number on him. It was cold and windy and he had a hard time with it. I think that those have been his only outings besides chemo and they are very hard on him, but he does it for the kids. Colton had a pretty good game, but his team lost. When we arrived home, we found a pizza delivery person in our driveway with a bunch of pizza and a surprise delivery from the Golson family just in time to watch the OU game. What a surprise. Thanks to the Golson family. That was so thoughtful!!!!

Matt, Angie, Jolene and Lauren left for Oklahoma City yesterday. It was nice having them here for a visit and we will miss them. We got up this morning and attended mass. Emily wasn't so sure about going to class, but decided to go and had a good time. We plan to have a restful afternoon with the family before gearing up for Monday again. Thanks to everyone for keeping Mark so lifted up in prayer. We appreciate all of the support. Remember the Pierce family as Bennie lost his battle to cancer this weekend at a young age of 13. He was diagnosed around the same time as Mark. God bless!!!!!

Friday, October 16, 2009

Oct 16-Two year anniversary

Hello to all. Mark and I went in for his second round of chemo yesterday. He has lost another 5 pounds in the last week and weighed in at 168 fully clothed and after eating breakfast. That is not a good thing. He has been trying his best to eat, but it is very hard for him and he simply isn't getting enough calories. His magnesium level was low and he required a 2 hour magnesium infusion before he could get the chemo. He vomited after getting the magnesium, but tolerated the chemo infusion okay. He slept through most of it and really didn't wake up. Dr. Farmer was, of course, concerned about the weight loss and was concerned about Mark's pain control. She wants to be sure he is comfortable at home and not suffering with pain. She is going to change his pain medications some to see if we can get a more stable dose of pain relief. Hopefully it will work a little better for Mark. She discussed having a hospice nurse come out to visit and make sure Mark was getting adequate pain relief, but Mark vehemently refused this.

Mark came home and crashed in the bed and was just exhausted after the chemo. He didn't eat or drink anything all day or even get up until around 10:00 last night. He finally got up and started drinking a little bit of fluids and around 2am decided to make himself a bowl of soup. The chemo actually seems to help relieve his pain for several days and I hope that this is a good sign. They didn't plan to draw another CEA number until he's had 4 rounds of this chemo, but she said if I really want to know she may draw one next Thursday a bit early. I really want to know what this chemo is doing.

I talked a little to Calen last night. He was very emotional and upset. I haven't talked to Colton much yet about how sick Mark is getting. I will try to do that soon. It is harder to explain to Emily.

We have not given up or lost hope, but are trying our best to deal with the situation at hand. We continue to pray for Mark and give him all the love and support we can. Mark's parents are here and his twin brother Matt has been here for some time as well. Matt's wife Angie and their daughters Jolene and Lauren came in for Fall Break and will be leaving over the weekend. We have been blessed with a lot of support. Please continue to pray for Mark. God bless!!!!!

Tuesday, October 13, 2009

Oct 13

Hello to all. Sorry I haven't posted in a few days. Mark had an okay weekend. He felt pretty puny on Saturday, but had a good day Sunday and wanted to go watch Colton's baseball tournament. The Slammers were undefeated at that point and were looking good. Mark sat at the edge of the fence. Colton had a good tournament and the Slammers won the championship. The boys all brought the big trophy over to Mark and presented it to him after the win. It was so sweet. We took pictures. The outing wore Mark out and he didn't feel so good on Monday, but by yesterday evening he was getting the pain back under control and seemed to feel better.

We had a great dinner that was brought to us by some church members and Andy joined us along with Matt and Mark's parents, so it was a good evening. My mom has gone home for now. She had a few delays at the airport and one reroute, but eventually got home safe and sound.

We are gearing up for another chemo on Thursday. I am not sure whether they will check another CEA this time. I believe she will and I pray that it has fallen drastically. God bless!!!!

Friday, October 9, 2009

Oct 9

Hello to all. Sorry I didn't post yesterday. It was a crazy day. Mark did well with the chemo infusion. He was hurting when he woke yesterday morning and took 2 pain pills before we left for the infusion center and was still hurting, so he took another one when we got there (that is in addition to the pain patch he is wearing). After they gave him the Benadryl as the premedication, he went to lala land. We watched him closely during the Erbitux infusion since he was so sedated. I sat and stared at him and watched him breathe. The first 5 minutes are the most critical as that is the most notorious for having the anaphylactic reaction. It was stressful, but after the 5 minutes passed, I could relax a little. After the first 30 minutes, I felt better and then each passing minute got easier and easier. They usually run this infusion in over 1 hour, but it took 3 hours yesterday because it was the first one. After the Erbitux, he got the Camptosar infusion. We were glad to be done with the chemo. That was the first time Mark got to get unhooked and leave the Cancer Center without taking a chemo infusion with him. Boy was it nice. Mark didn't get nauseated which was a big plus. He felt extremely tired and his skin looked a yellowish gray color (if there is such a thing). He always does that with the chemo.

He didn't drink anything but a few sips yesterday. He ate a very small amount of food for dinner and then decided he wanted to go to Calen's football game last night. We were all a little shocked to hear him say that. He managed to sit through the game. It was a good one. Auburn beat Smith Station who was previously undefeated. After the game, Mark had a really difficult time managing the stairs. He had to climb up 4 steps and each one must have seemed like a mountain to him. He had to stop between each one and rest and pull himself with the handrail. I thought we were going to have to pick him up and carry him for a minute, but he managed to make it on his own.

He is up this morning and vomited once. He is tired and just worn out, but managed a Carnation instant breakfast. Hopefully we can push some calories in him today and get his activity level up.

Thanks for all the prayers. We feel God's presence at work. God bless!!!

Wednesday, October 7, 2009

Oct 7

Well, tomorrow is the big day. Mark will once again start his chemotherapy. We are both excited about it and dreading it at the same time. He hasn't been feeling good today, so that makes getting chemo tomorrow sound even less appealing. Matt was here with him this afternoon and Mark was starting to hurt a lot. He wasn't due to change his pain patch until tomorrow afternoon, but they decided to change it a day early to see if they could get better control on Mark's pain and I think it has finally started helping. Dr. Farmer talked to us about doing this if we needed to, so we may have to change the patches more frequently. Mark's CEA marker was very high at 240. It was around 60 prior to surgery. We hope this chemo can get the marker to fall dramatically with treatment.

We are scheduled to be at the infusion center at 8:30 and the infusion should start shortly after that. They will give premedications first to decrease the chance of Mark having a reaction. They will give only a small dose of the Erbitux at first and infuse it slowly over 5 minutes. If there is a reaction, it usually happens within the first 5 minutes. If we get past that, they can speed up the infusion a little bit and watch him. He will have another drug to get as well, but it is one he's had before and we don't expect complications. It does cause severe nausea. Mark required multiple antinausea medicines and the electrical stimulator watch for nausea with this drug before, so hopefully we can manage (especially with his already poor nutrition status). We will have to do these treatments once a week for 4 weeks and then Mark will get 2 weeks off before we restart the cycle.

Mark wanted to watch the wedding video tonight. We used to watch it every year on our anniversary, but eventually got out of the habit and we haven't watched it in years. It was fun seeing it again. We look so young (like kids) and had so much fun. The kids in the wedding are now grown and in college.

Please continue to keep Mark in your prayers and say a special prayer for him tomorrow while he gets this new chemo agent. We hope and pray that all goes well. Remember Bennie Pierce who is fighting cancer and pray that Carly Parker remains cancer free. There is one more prayer request today for Joel Speigner who was recently diagnosed with GI cancer. He has started chemo and needs the chemo to shrink the tumor enough for the surgeons to be able to surgically resect it. Please remember Joel in your prayers as well. Thanks for all the love and support. God bless!!!!!

Tuesday, October 6, 2009

Oct 6

Hello again. We had a good day today. Mark is starting to get a better handle on the pain. It is definitely still there, but he is learning how to manage it a little bit better and it is making life a little easier for him. The patches have helped and he is using pills for breakthrough pain. He looked much better today than I've seen him since surgery and it was a good feeling for me.

We visited with Dr. Farmer this afternoon. Matt, Mark's twin brother, went to the Dr. appointment with us. It really freaked Dr. Farmer and all the nurses out to see Mark's identical twin. They just couldn't believe that there were two of them. They all filed in to see them both and joked that they should charge admission. We discussed the upcoming chemotherapy and are still planning to start it on Thursday. Mark lost a pound and is down to 173, but actually looks better than he did last week, so I'm not too concerned about the pound weight loss. He has agreed to do the Carnation instant breakfast drinks (as opposed to the Boost or Ensure) and Dr. Farmer was glad to hear that he caved on that. She now asked him to do 2 daily. She's really pushing him!!!! (haha) Mark said he would try it. We again discussed the chemo agents and the potential for the Erbitux to cause anaphylaxis. Usually if it happens it will be on the first infusion and during the first 5 minutes. Boy am I dreading that!!!! Pray that Mark does not have an anaphylactic reaction to this medication. The other big side effect is a rash which is quite common and Mark will probably just have to deal with. The chemo will be weekly one day infusions for 4 weeks and then 2 weeks off and then he will repeat that cycle again.

Mark has started getting out of the house a little bit which is a BIG step for him. He went yesterday and today to Calen's football practice. He was considering going to Calen's football game this Thursday night, but now that chemo will get started, that may not be possible. We will have to see on that one.

We have had so many people helping out. Thanks to everyone who has brought food over. It is very appreciated. Also a big Thank You to Jason Price for your visit tonight and for fixing our fan. We love you so much!!!! Thanks to all of you who have continued to pray for Mark through this battle. We couldn't have made it this far without all of the support and prayers. Please remember Bennie Pierce and Carly Parker in your prayers as well. God bless!!!!

Sunday, October 4, 2009

Oct 4

Hello to all. Mark had a rocky weekend. He managed to make it out to Colton's football game Saturday morning. He got to see Colton score a touchdown and make several good carries and many great tackles on defense although their team lost by a touchdown. It was a good game. Mark's twin brother, Matt, made it in from Oklahoma and will be staying a while and my mom is still here. Brent and Kathy (Mark's parents) will be heading back this weekend in time to get my mom back to the airport.

Mark's pain patch is helping to control the pain some, but he is still requiring the pain pills and then ends up sleeping a lot. He gets frustrated and is never truly relieved of the pain. It is pretty constant for him. He is trying his best to eat, but it is difficult because of the abdominal pain that it causes (bloating and distention). He got in a Carnation instant breakfast with his milk today for the vitamins and extra protein which helped and ate pretty well this evening.

Mark wasn't able to go to mass this morning, so Father Bill brought communion to Mark this afternoon and visited for a short time. It was very nice of him and we appreciated the visit.

I will start back to work tomorrow. It will be very difficult for me to leave Mark. I'm sure I will be very distracted, so I don't know how that will go. I am going to give it a try.

We see Dr. Farmer Tues afternoon and hopefully get to give the new chemo agents a try on Thursday. We are praying that this new chemo will be helpful for Mark and that he will not develop an allergic reaction to it. We pray for strength for Mark to continue this battle. It is really wearning him down. It is hard for us all to sit and watch Mark suffer so much and not be able to help more. We all feel a little helpless and somewhat frustrated. We hope to see brighter days in the near future for Mark.

God bless!!!

Friday, October 2, 2009

Oct 2

Good news today. We just got back from Dr. Farmer's office. She was impressed with how much better Mark looks today. He hasn't had any more fevers. He gained a few pounds and is up to 174 now. She wants to get his pain under better control so that we can get a few more pounds on him, so she is putting him on a long acting pain patch. We will start that today and see how it does. Hopefully it will be just what Mark needs. She wants him to drink supplements like Ensure, Boost or Smoothies, but he won't. (I've been trying that since his surgery. Glad it's not just me he won't listen to.) She says he needs the vitamins to heal, but he is so stubborn!!!

We will see her again on Tuesday afternoon for an appointment and to discuss the chemo again and then she plans to start his chemo on Thursday. YEAH!!!!! The chemo regimen will be different and this one will be given weekly for just one day. The down side is that 1 in 5 patients has an allergic reaction to the drug and sometimes it is an anaphylactic reaction. She said they had to code a patient who started this a few weeks ago with chest compressions. Not what we wanted to hear. They did resuscitate him.

We are glad to be moving in this direction and pray now that Mark will have success on this new chemotherapy and not be one of the patients who develops an allergy. We have to think positive. Continue to keep Mark in your prayers as always. Remember Bennie Pierce who is also battling cancer and pray that Carly Parker remains cancer free. God bless!!!

Thursday, October 1, 2009

Oct 1

Today was a mixed day again. Mark saw Dr. Johnston yesterday who was covering for Dr. Farmer. They just wanted to make sure the increase in Mark's pain level wasn't something worrisome like peritonitis or something else. They were confident that it is just cancer pain after seeing Mark. Mark, of course, gets there and plays it off like he's doing okay and not having that much pain. It must just be a man thing. I am about to fall on the floor because we haven't been sleeping at all at night since he is up totally miserable, moaning all night and can't eat or function because he is in so much pain and he is sitting there telling the doctor "oh it's not that bad right now". I wanted to punch him and make it hurt. Of course I opened my mouth and started telling the doctor that he wasn't sleeping, etc, etc. to get all of it out there. Mark says "I really just think it's gas pain". Oh I wanted to shoot him. Anyway, Dr. Johnston increased his pain medication quite a bit and more frequently so that he can be comfortable. It was helpful, but Mark still wakes frequently with pain and has to take more pills (every 3 hours) and doesn't get a good night's sleep. We discussed using a patch which would give longer pain relief and I think we may discuss this with Dr. Farmer tomorrow when we see her.

Mark didn't eat dinner at all last night or any breakfast this morning because he was having too much pain. (But it's not that bad and just gas pain according to Mark. Imagine steam coming from my ears). We got him more comfortable by lunch and he was eating again. He was able to eat dinner tonight and we are trying to talk him into a late night snack now. We need to play catch up with the calories.

Calen had a Jr. High football game tonight against Eufaula and Mark was not able to make it. (Auburn won 40-12.) He is simply too sick to go. He goes from the bed to the comfy chair in the living room and that's pretty much his day other than trips to the bathroom. We tried to talk him into a walk outside today for sunshine and fresh air, but he refused.

Mark's parents are back home in Oklahoma. They are resting up and gathering Fall clothing for a return trip soon. My mom is here for reinforcement and Mark's twin brother, Matt, will be here Saturday morning.

We see Dr. Farmer early tomorrow morning and hope that we get good news about being able to restart chemo. Mark is weak and chemo will certainly make that worse, but there aren't other options at this point. We've got to push forward if we want a chance to reduce the tumors and reducing the tumors may give Mark pain relief and allow him to eat without pain. Pray that Mark can regain his strength and gain his weight to withstand the chemo. Thanks again to everyone for the support. God bless!!!