Thursday, October 25, 2012

Newest Treatment Plan

This is a REALLY long post, but i wanted to explain all the details. Also, I've had very little sleep lately and I'm barely able to keep my eyes open as I type this. So please be patient and forgive any typos or things that just don't make sense. ;)  Update on Mark- So, we went to see Dr Fink today. (She is Mark's Neuro-oncologist in Dallas). I was extremely nervous. When Mark had his Avastin infusion a couple of weeks ago, the nurse told us that today would be Mark's last chemo (Carboplatin) treatment. I knew that the Carboplatin was no longer working since he got a tumor while on it, but I believed that it was slowing down the growth of the tumor. I was finally starting to feel a LITTLE better about the fact that he would no longer get to have chemo because I knew that he would still be on the Avastin every two weeks (which also failed to keep tumors from developing, but was probably slowing down the growth) when I got a call that Mark's UA showed that he was spilling protein into his urine. The nurse that called me explained that Avastin can be very hard on the kidneys, so that was probably the cause of that. She said he would need to do a 24 hour test to see if he was having kidney failure and that they would probably need to stop the Avastin treatments if his kidneys were really bad. So, I went into the appointment today thinking that Mark was going to have no more chemo and no more Avastin and I was honestly preparing myself to hear the doctor say that there is nothing else that can be done and that we were at that point where we are just waiting for the cancer to progress far enough that it will take his life. Praise God, that is not what Dr Fink said!  First, she said that the MRI didn't show that the radio surgery shrunk the tumor any, but that it really hadn't grown any, so that was a good thing. She said the radiation will continue to work for a while, so we could see some benefit of it in a future brain scan. She did say that today would be his last Carboplatin treatment, but she was questioning her treatment plan that she has had him on. She said since he developed a tumor while having the Carboplatin she was thinking it might not be the best option for him. She was looking back in his records and found that there was a little bit of confusion from when he stopped taking his Oral Chemo 2 years ago. This is what happened then... He was just finishing up his year long treatment of intensive oral Chemo (Temodar) when his regularly scheduled MRI showed a second tumor and he needed surgery. After surgery, we were told he needed to start IV chemo (Carboplatin) and Avastin because the oral chemo (Temodar) had failed to keep tumors from developing. Today the doctor looked back at his records and said that it is possible that the 2nd tumor didn't show up until AFTER he stopped taking the year long treatment of Temodar. Because of the timing of him stopping it and when his MRI was scheduled, there is no way to know if the tumor developed while he was still on the Temodar, or if it showed up just after he stopped it. ANYWAY, since there is the chance that the Temodar didn't fail, there is the chance that it could work to suppress the current tumor and prevent the growth of new ones. So, Mark did not get Carboplatin today, and is officially done taking it. He will start on November 1st, taking the Temodar daily. Once the results come back for his kidneys, he will probably be put back on the Avastin as well, but he will have that every 3 weeks instead of every 2 weeks. He will also be taking Celebrex daily (it is supposed to help the chemo pass the blood brain barrier more efficiently) and will need to take the antibiotic Bactrim 3 days a week. We are REALLY hopeful that this will be a great treatment for him and prevent any more tumors from developing. He will hopefully feel much better overall as well without the Carboplatin. So overall I am very happy about today's visit since it was so much better than I thought it would be!  Please continue to pray for our family and especially that Mark does not develop any more tumors while on the Temodar. 

Thursday, July 12, 2012

Yesterday was our 14th wedding anniversary.  I wish it had been a better day for us.  Mark had an MRI that showed that he has a new tumor.  This means that the Avastin and Carboplatin is no longer stopping the tumor cells from growing, but the doctor feels it is at least keeping it from rapidly getting larger.  So, Mark will continue to get the infusions every 2 weeks.  We are looking for the next treatment to try as well.  Right now the tumor is too small for surgery.  Targeted radiation is an option.  He has an appointment with Dr. O'Conner on the 30th to talk to him about that.  Dr. Fink sent off a tissue sample to see if Mark's tumor has the EGFRvIII protein.  If it does, he will eligible for a clinical trial using a vaccine.  For those of you interested, the vaccine is called rindopepimut and is also known as CDX-110.  I am researching other clinical trials that Mark might qualify for through MD Anderson and Duke University Cancer Center.  We have some big decisions to make in the next few weeks, so we would appreciate your continued prayers. 

We did get some good news this morning- we are going to get to go on our vacation as planned!  Mark will be going to NC on Monday and working at the Microsoft campus there until Thursday.  The boys and I will be flying into NC on Thursday to meet Mark and visit a few friends for a couple of days.  Then we will all fly to Florida together to spend 4 days at the Disney parks, 1 day at Lego Land, and 2 days at Universal!  We are really looking forward to spending time together as a family doing such fun activities! 

Wednesday, June 6, 2012


Colin said he wanted to raise money for Daddy's doctor.  He talked to the manager himself to tell him what he was trying to do!  I am so proud of him.  Carter said he wanted to help too, so I am looking for different fundraisers they can work on in the near future.  This is the first one.  If you are local, can you please help make it a huge success?  Will you please print this flyer and take it to a Friso Chili's (both locations are participating) on June 20th?  Give it to your server (or the person working the take-out register) and Chili's will donate 10% of the order to Mark's doctor, Dr. Karen Fink at Baylor Neuro-Oncology Foundation.  Please forward this to everybody you know in the Frisco area so that we can have a huge turn out for this event.  If you are not local, or are not able to attend, please keep us in mind and say a special prayer for us on that day.  Thank you so much for your support!  Right click on the flyer and select print (it does not have to be printed in color).

Friday, December 30, 2011

It has been more than 3 months since my last blog post. I’ve had so many more emotions in that time, but just never actually posted about them. I’m thinking I should make a private journal to keep track of all of my feelings so that I can go back and share them in the future if I feel like it would be helpful. That’s mostly all I’ve had the last couple of months is emotions. Mark is (Praise God!) still doing really well. After his first chemo treatment I was very discouraged because he was so sick. He had no energy at all. He said he couldn’t even watch TV. He just sat in his chair in the living room and looked out the front window watching our across- the- street neighbor’s flag wave in the wind. I thought that was how it was going to be from that time forward and I just couldn’t take it. I cried so much those few days thinking that I didn’t want that life for him. He had to sleep most of the time and I had to try so hard to keep the boys quiet for him. It was hard on the little guys. Carter would get so upset that he wasn’t allowed to have any friends come over because his Daddy was home and not doing well. I felt very depressed during that time. After a few days, Mark started to get some of his strength back and I started to feel a little better. Once he was able to go back to work, I felt like things would be ok after all. Now that he has been on the Avastin and chemo for 3 months, we have a better idea of what to expect after treatments. After the Avastin, Mark feels a lot of sinus pressure and has major allergy type symptoms. He sneezes a lot and feels a lot of congestion. That is bad for a couple of days and then gets a little better. After Chemo he is fine for about a day and then it hits him hard. He doesn’t throw up much. In fact, he has gained weight since starting chemo, which is of course much better than losing weight and becoming too thin. His whole body feels the effects of the chemo though. He has no energy at all. He does feel sick to his stomach, and he feels cold all the time. To me it seems like a severe case of flu. He sleeps a lot during those days and he has to miss a couple of days of work after each chemo treatment. He has been able to use vacation days so far so that his pay has not been affected from the time he has been out. He seems to be getting sick sooner after each chemo treatment and it seems to be more severe each time. I am afraid that there will be a time when he is no longer able to work, but we will cross that bridge when we get there. For now, we are just so thankful that he is even able to continue working full time. He just signed up for short term disability to take intermittently so that he will not run out of vacation days. It will be an adjustment to not get his full pay on those days, but we are thankful for the chance to use that so that he doesn’t run out of vacation days. It is important for us to be able to use those days for special time together as a family to make more memories. Mark and I are actually talking about going on a vacation together in the next couple of months. I hope it works out, because that would be amazing!
My dad’s wife passed away a couple of weeks ago, so that has brought about many more emotions. Carter asked if his NaNa was sick like his Daddy. I’m sure that it is so much for Colin and Carter’s little minds to take in. They have their moments of struggle, but overall I am very proud of how well they are doing.
Colin was baptized on the 18th. What an exciting day! We were so thankful that God allowed Mark to be here for the time when Colin accepted Christ, and for the baptism. That was a huge blessing!
Mark has made a new “bucket list” for this year. I am trying to get some of them to actually happen for him. We’ve had to start having some difficult conversations about Mark’s wishes for the end, burial and funeral things, etc. Those are hard talks to have and I hate having to discuss those things. I know it is important to be prepared for when the time comes , however.
I am almost finished reading a book right now called “The Color of Rain” It’s a beautiful story about a blended family. Both of the parents lost their spouses to cancer before they met. The man’s wife died of the same cancer as Mark, Glioblastoma, and she only survived 17 days after her diagnosis. That makes me feel so grateful that we are approaching the 2 year point with Mark pretty soon. What a miracle to still have him here with me! I cannot imagine my life without him!
Anyway, that’s the latest update on Mark. I hope everybody had a great Christmas! I’ll post again soon!
God Bless you all!

Tuesday, September 27, 2011

New treatment plan

Mark had an MRI yesterday and an appointment today with Dr. Fink. She said his scans looked good. Everything she saw looks normal for post-surgery. She feels that the Temodar is no longer an option for treatment. When Mark was at the very end of taking it, she noticed a spot on his MRI to watch and that is what turned out to be the tumor a few weeks later. That tells her that Mark’s tumors became resistant to the oral chemo. She will be starting Mark on Avastin this Monday. He will have that infused via IV every other week. In addition to the Avastin, he will be infused with Carboplatin (IV Chemo) every other time. So, he will be given Avastin twice a month and chemo once a month. The Avastin is a relatively new treatment designed to basically starve the tumors causing them to stop growing and even to shrink. It blocks blood vessels from forming on the tumor. It is used for a few different cancers including Glioblastoma. Dr. Fink said that patients are generally on it for a year or until a tumor appears, showing that it is no longer effective. It has some risks of side effects, some of them very serious, but the percentage of people that have them is low. One of the more common problems is complications with healing. Because of that, Dr. Fink was concerned about a noticeable thread (internal stitch) that had made its way to the surface of Mark’s head through his incision site. She sent us to see the surgeon. His PA saw Mark and was able to snip it down. She said it would dissolve eventually. So, it should be safe for Mark to start the Avastin on Monday. Mark said he is excited to start this treatment. I asked him why and he said it’s because it means he gets to live longer.

There was really no bad news today and I know we do have so many blessings to be thankful for, but I just cannot seem to shake this funk that I’m in. Yes, I’m glad this treatment is an option for us, and I’m glad that no new tumors have grown since the surgery. I know that it is a miracle that Mark is still here. Most GBM patients do not survive more than 14 months and Mark is still here after 18 months since his diagnosis. I am grateful that the Temodar worked as long as it did and that Mark felt pretty good while on it. I’m so very thankful that we were able to take some wonderful trips this past year and make some fantastic memories. But, I’m still sad and angry and very anxious. I have still not had any anger toward God. I still trust Him 100% that He will provide everything we need and get us through all of this no matter the earthly outcome. However, I feel so angry at cancer! I feel like it is so unfair that such a good, Godly, man had to be attacked in this way. I feel sad about the problems our boys are having trying to adjust to things. I wish the cancer could just go away! I am thankful for amazing people that have stepped up to help and support us during this time, but I’m frustrated when I hear people telling me to “chin up”, “trust God”, “don’t worry”, etc. I appreciate that they are trying to do something good and say the right thing, but really, I just sometimes need somebody to listen to me vent and try to sympathize with my emotions. I want to get to the point where Mark is. He seems to be so at peace about it all. I admire him so much. He is just amazing! Anyway, that’s enough about my crazy emotions. Thanks for reading this and thank you especially for all of your prayers and support.

Tuesday, September 6, 2011

quick post-surgery update

I want to do a longer post here on the blog, but I just haven’t been able to do it yet. I thought that I would do just a quick update now and then come back to it later when I have some time to write about all of the details and emotions of the past few days. For now, I’ll just tell you that the surgery went well. Mark is back home now and doing great! It is a HUGE blessing that Mark has no speech problems at all! He has a little trouble with his right side – particularly with his right hand. He has some dexterity issues with it, but that is getting better and better every day. His spirits are pretty good. He is bored from sitting around the house so much and not being allowed to do all the things he wants to do. That will get better as he is able to do more things. He has an appointment next week with the surgeon. They will remove his sutures and do a little check up on him. He has another MRI scheduled for 3 weeks from now and then an appointment with the oncologist the next day. She will be able to tell us then (based on the post-op MRI) what treatment options are available for Mark. Then we will have to make a decision about what will be best. We know that realistically, he only has months left with us here so we don’t want to choose something that will make his quality of life horrible. We have not given up hope though! We still pray for a miracle of healing, or at least for more time for us to make great family memories. We thank everybody for all of the prayers and ask that you continue to pray for our family.

Monday, August 22, 2011

Here we go again

Mark and I just got back home from taking the boys to the first day of school this year. I can hardly believe we have a 1st and 2nd grader now! The boys did really well going in to their classes. I think they will have another great year. I’m so proud of those sweet boys!

It’s just been a few days since we got back from our Disney Alaskan cruise. It was wonderful! The scenery was just beautiful and it was nice to be in some cool weather for a change. We were able to see some amazing things. We saw a black bear up close and personal, the salmon swimming upstream, some sea lions, some whales, some dolphins, and bald eagles! Mark had a fabulous time taking pictures. He was so happy and that made me so happy. :) The day we went whale watching, the locals couldn’t stop talking about the weather. It was sunny ALL day, and that just NEVER happens there. It was just perfect weather. I was telling the whale watching guide that I believe the sun was out for Mark. I told her his story and about how much he wanted to see all the wildlife, especially the whales. She said that she never sees so many of them and never as close to the boat as they were that day. I was just praising God for that blessing!

At the beginning of summer, I was really feeling like I was ready to go back to life as “normal” as possible. Mark was doing so well, and I was feeling good, so I thought I would like to get to work with kids again. I was being kind of funny and said to Mark, “Are you going to die this year?” He said, “I’m not planning on it!” I said, “OK. Good! Are you going to get another tumor this year?” He said, “I’m not planning on it!” I said, “Good! I think I’m going to go back to work at CLC”. I can’t explain the joy I got from working there the 3 years prior to Mark’s diagnosis. I LOVE those 2 year olds so much and they brought me so much joy. I just have this thing about kids. I think they are amazing and I love being with them. Anyway, I called to see if I could go back to work there and was told I would get a call back. I never did. I was so sad, but something told me to not try to push it. I prayed about it and started to feel a peace about not being able to go back to CLC now. I just knew that God was in charge of that and there must be a reason I needed to be home this year. I didn’t want to think negative thoughts, so I just said that maybe there was going to be something really good happening and I needed to be home to enjoy it to the fullest extent. It was wishful thinking, but I didn’t want to walk around expecting something bad to happen.

After Mark’s last MRI, the doctor scheduled another perfusion MRI for 8 weeks after that appointment. It would normally be a regular MRI 3 months out, but since she saw those cancer cells “waking up”, she felt it would be best to have the more detailed scan at an earlier time. That MRI was on Thursday. We got up early to drive to my mom’s house and she drove us from there to the imaging place. Mark did the MRI and then it was time to wait 3 hours for the results. We went to eat at the mall and then we headed to the hospital, where Mark’s neuro-oncologist is located. I kept saying that we would go soon and get the good news. I just was feeling a little anxious and felt like I should talk more positive than usual. Finally, it was time for the appointment. The doctor’s assistant came in and did the neurological exam on Mark. I noticed it was quicker than any of the other ones, but wasn’t sure if it was my imagination or what. All that was left was to wait for the doctor to come in with the films and the results. I seemed to take FOREVER for her to come in, but she finally did….

As soon as Dr. Fink walked in the door, she did her quick hello and then it went like this…[the words in quotes are what she said and the words in parenthesis is what I said in my mind]
“Well, I’m really glad we decided to do the perfusion MRI now.”
(Hmmm… She usually says that this is what a good scan looks like or that everything looks ok)
“There is a spot that showed up clearly on here”
(Great, another thing to keep watching and for me to try to not be anxious about)
“I think it needs to come out right away”
(Oh, she means a tumor – not a spot - this is why I didn't get to work at CLC this year)
“I’m sorry”
(Oh no! This is my worst fear! It’s back and this is the end! I’m going to lose my husband!)
I started crying uncontrollably at that point. Dr. Fink is such a nice lady and she gently put her hands on mine on my lap and said, “I know. He was doing so well.” I looked at her and saw tears in her eyes. I tried so hard to settle down so I could hear what she had to say next. I looked at Mark and he looked sad, but very calm and collected. Dr. Fink told us that she had already called Dr. Barnett, the neuro-surgeon. She said he was expecting us to go see him right then and he would work us in. I had so many questions about what would happen with treatment, but Dr. Fink really didn’t want to talk about that until after surgery. She said she would not exclude any option so that we could have as much chance as possible to battle this. I think a lot depends on how the surgery goes. She said the Chemo Mark had been on would not work at all, so he could possibly go on a different type of chemo after surgery but we would just have to wait until the time comes. I remembered reading about other patients when brain cancer that had a wafer inserted during surgery. I didn’t really know much about it, just that it is put in the place where the tumor is removed and it releases Chemo directly in that cavity. So, I asked about it, and Dr. Fink said that she actually thinks that could be a good option. She said she would call the surgeons office and let him know that she gave the ok for him to insert the wafer. We went upstairs (his office is in the same building) and did some more waiting to see Dr. Barnett. I just kept crying. My mom and Mark were both trying to comfort me. I told Mark that he shouldn’t be comforting ME, but that I should be having to comfort HIM. He said he was really expecting some bad news so he had prepared himself for that. He is so brave! I’m so proud of him.

We finally saw the surgeon. He agreed that the tumor should be removed. He said that he will be very aggressive with it so that he can get as much as possible. He explained that the tumor is in Mark’s speech area of his brain and since he will have to cut out so much of his brain this time, he will certainly have speech problems when he wakes up from surgery. And, unlike last time, it could be severe and permanent. Mark said that would be ok because he will do whatever it takes to fight for his life. We talked to him about the chemo wafer, but he didn’t seem to be a big fan of it. He said it has a high risk of causing infection, which can be very difficult to get rid of when it’s in the brain. He said it could result in more surgery and possibly the removal of his skull plate. He said that the company that makes the wafer makes it seem wonderful, but when you really look at the studies, you will find that it only increases life expectancy by about 2 months. Mark said that he is really thinking now that he does not want to proceed with doing the wafer. He feels like if it gives him 2 more months, he doesn’t want to spend them in the hospital with a brain infection or having multiple surgeries. We will need to do some more research and then call the doctor back this week to let him know one way or the other.

Dr. Barnett said he didn’t feel like this tumor needed to come out just immediately (Dr. Fink did), but I reminded him that he said that last time and the tumor doubled in size from that day to the surgery day a couple of weeks later. He agreed with me that it should be sooner than later, so we went to look at his schedule. He is very booked, but he said he can do Mark’s surgery after another surgery on another patient next Monday (Aug. 29th). We are to be at the hospital (Baylor Dallas) by 10:00 Monday morning for Mark to get his pre-op MRI. Dr. Barnett thinks he should be able to get started on Mark’s surgery between 2:00 and 3:00 that afternoon. It should be about 5 hours long. It’s hard to believe we are going through this again. I am honestly very frightened, but I still have faith in God. I was listening to Jim Bob Dugger on a Focus on the Family episode a few weeks ago and he said something that really stuck with me. He said that God’s will is what you would want if you knew all the facts. I had been saying that I trust the Lord 100%, but that His will is not always our will, and that’s what scared me. Now I keep thinking about that definition of God’s will and how if I were able to see the big picture through God’s eyes, my desire would be exactly what is going to happen by God’s hand. I have faith and I have never doubted God through all of this, but I am human also and I have human emotions. It sounds selfish, but I can’t help but think that it is harder for me than Mark. We know that if he is not healed here on earth, that he will be healed eternally and will forever be in the presence of our Lord. He will never have fear or pain again. He will experience only joy while I will be here grieving . I know that God will provide, but again, my human nature comes through and I think selfishly, “How can I manage without Mark here? How can I function as a single mom to two boys? “ I also worry about how to teach the boys to not lose their faith. The first thing Colin said when he heard that his Daddy has another brain tumor was, “but we prayed so hard!” I NEVER want my children to doubt God’s love for them and our family. I know this is all stuff that people say I should not worry about, but I just felt like I should post about my true emotions right now. Maybe somebody else that reads this is going through something like this and has the same feelings. I have had a couple of friends post things to me from the same book, so I am going to try to go buy it today. I think it will help me to remain focused on God. I know I need to do that so that He can talk to me and help me through all of this. Yesterday at church, it seemed like every song spoke directly to me. They all had something to do with healing. I don’t know if God will heal Mark physically, or if he will heal our family emotionally, but I know that we will be healed! I will Keep the Faith!

This week I am working on getting everything in order for next week. I have a friend who is blessing us in an amazing way by keeping the boys for us while Mark is in the hospital (I am staying with him there). She will take them to and from school, help with any homework, and most importantly, I know she will love on my boys and reassure them and make them feel loved. I have spoken to both of the boys’ teachers and the new school counselor. When I was telling the counselor about everything, she told us that her brother was diagnosed with brain cancer last year so she has more understanding than some people. She said it affected his speech, but after therapy, he regained it all and she said even talking on the phone with him, she cannot tell that he ever had a problem. That was so very encouraging to us! It certainly wasn’t a coincidence that she is the new counselor. It’s for sure another God thing! She is very sweet and I think she will be so helpful to the boys just like the counselor that was there last year was to them.

I’m going to end this super long post now so I can get back to working on arrangements for next week. I’m trying to set up a couple of special visits to Mark from some special people. ;) Please continue to pray for our family and ask others to do the same. It means so very much to us to receive all of the prayers, notes of encouragement, calls, etc. Mark is actually wanting to hang up all of the notes and cards he got last year on a wall in our home. If you would like to send any notes or have your kids make him a card (those are the BEST!), that would be so nice! Thank you for taking the time to read this long post. :)
Here is our contact info:

Mark, Becky, Colin & Carter Durrett
3518 Corkwood Dr.
Frisco, TX 75034
469-252-0598 (home)
214-592-3906 (Becky cell)
markdurrett@hotmail.com

Next Monday Mark will be checking in at 10:00am at Baylor Dallas in the Hoblitzelle building. We are hoping that he will do as well as last year and only have to be there for about 3 days. :) Anybody is welcome to come visit. You can call me and I can give you a room number if you’d like. God Bless You!