Wednesday, August 11, 2010

New treatment plan

I’m so thankful to have this blog to share information with everybody, but I’m so bad about keeping it updated! I have good intentions, but as you can tell, I’ve had a problem following through on those intentions.  Anyway, I do want to give an update now since Mark is on a new treatment plan. This is how it all started…
We were so excited that Mark was picked to take all three medications in the clinical trial as well as the chemo. He was taking 300mg of the chemo for 7 days on and 7 days off . He was also taking Thalidomide, Accutane, and Celebrex. Mark was having a lot of trouble with the medication. He could not function. He was falling asleep in his chair while he was working at the computer. He felt miserable all day every day. He had a very hard time waking up in the mornings and just could not enjoy anything. We figured it was the Thalidomide making him feel like that, so we got permission for him to stop taking it for a couple of weeks and see if that made a difference. It did. He felt so much better after that got out of his system. The Accutane was making his skin very sensitive. He couldn’t be in the sun and his face was peeling very badly. I had to do a lot of facial treatments on him and lather his face with a very thick lotion. Then his arms started peeling too. We started seeing commercials for lawsuits being filed against Accutane because of all of the stomach problems it was causing in people who took it. Those people just took a regular dose. Mark was taking more than twice the “normal” amount. Because the thalidomide can cause blood clots, he had to take Coumadin also. That made him feel really cold and he bled easily and profusely. That caused a little trouble when he had to go get his blood checked every 2 weeks. A couple of weeks ago Mark got really sick to his stomach. We didn’t know for sure what was causing that because both the Accutane and Celebrex can cause stomach issues as a side effect. We were thinking it was probably the Accutane since it is known to cause severe stomach issues. We didn’t think it was the chemo since he took it every single day while we were in Houston for 6 weeks and he didn’t have any trouble with it then. We called to talk to the doctors in Houston about it and they said that he can’t continue on the trial if he doesn’t take all of the medications he was chosen to take. So, he made the decision to stop the trial. A couple of days after he quit taking the medications he felt much better. Although he quit the trial, he still needed to continue taking Chemo. Mark said that he really wanted to continue taking the same amount as he was taking on the trial. The doctors in Houston said that they would just give him the standard of care which is half of the dosage of chemo that Mark had been taking and it is only 5 days of the month instead of 14 days per month (7 days on and 7 days off). We decided that he would get equal care if he continued in Houston or if he switched to using his local neuro -oncologist as his primary doctor, so we decided to use the doctor here in Dallas. When she talked to us, she told us that she wanted to keep him on the same dose that he was on before! That is exactly what Mark wanted to do and we had no idea it would even be possible to do that. We had not told her what Mark’s desire was as far as the chemo, so we know this was just another blessing from God. Mark will be able to do his MRIs here in Frisco every 8 weeks, and he gets his bloodwork done every week at a place that is also close to home. So, we love MD Anderson and we had a great experience doing his initial treatment there, but things will be so much easier for us now that we won’t have to go to Houston for 2 days every 8 weeks. We are still so thankful for all of the blessings the Lord has provided us during this whole battle with Mark’s brain cancer. Mark and I were talking the other day about how these types of devastations tend to make couples much closer or tear them apart. We are so thankful for the strength of our relationship with each other and with God. I have never felt closer to Mark than I feel now. I am so thankful for him and so very proud of him. We have had time to be on our knees together praying for a miracle and for guidance to follow God’s will. Mark seems to be very much at peace about the future if it is God’s desire to take him Home. Of course, we will continue to pray for total healing here on earth too. Mark said that the David Barnes song God Gave Me You is special to him during this time and he sent an email via his website to thank him for the song and tell him how much it means to him for him to be able to share it with me. (I’m telling you, he is such a sweet husband!). That night, Mark got an email back from Mr. Barnes telling him that he appreciates Mark sharing his story with him and that he prays for Mark to be healed. Mark also sent a short version of his ordeal to another group that sings a song that means a lot to him right now. They responded and asked for permission to share it on their website. I think that is really cool too!  Well, I think that is enough for this blog for now. Thank you all for reading this and for your continued to prayers!