I know many of you have probably been on my Facebook page a gazillion times looking for an update. If there is something one must know about me, I am a processor. I have to take the facts and I have to hang onto every word and evaluate each word in every light possible. Often I have to get through this before I can adequately express the facts. I can say with utmost confidence I have still not processed all the facts we learned yesterday. I think it is going to take a few days. However, because you are so sweet to carry us in prayer through these difficult seasons, I do want to try to go ahead and give an update. The facts and thoughts are still racing around in my head as they were even most of the night. Zine, well, nothing interferes with his sleep! Our emotions are still definitely very tender and will probably be so for a few days.
The oncologist thought the chemo wasn’t working. We could see some signs that it wasn’t working. However, we see things very gradually over several months. When we go to the neurologist and they do their assessments, then the regression comes into full light and you can see the major differences even in three months. The difference in three months is absolutely heartbreaking. We both saw the differences come glaring out at us and we both felt VERY sad.
Dr. L came in the room very somber. He had already read the facts and seen the nurse practitioner exam notes. He knew. And he was sad. All of the visits, he has said, I am going to make you feel better. This time, he said, I’m sorry. I’m doing everything I know to do. And it’s not working. Quite a somber place for a doctor to go. But very very obvious, it is not working.
The most pressing issue was to continue with chemo, to change chemos (there are 2 other drugs we can try but they all operate similar), or to discontinue chemo all together. One thing that became very obvious, when you discontinue chemo all together it feels like you are quitting. As the wife, I can step back and see that very differently. But I totally understand and can grasp why it feels like quitting. So we will just say, there wasn’t a peace about doing nothing. So the next question is to change or not to change. After some discussion, we decided we would take one more chemo treatment. One can always have a hope that Zine is a “late bloomer”. Maybe his body is just slower to respond to the drug that usual. So, in an effort to keep fighting we will take one more chemo round with current medication. We will do that the first part of August and then we meet back with the neurologist on Aug. 19. At that time, the game plan changes. We will be trying a different drug. We do still have many questions about the drug but we have a plan and know what the next battle line will be.
We also know that unless God chooses to heal, this disease is going to continue to run rampant in his body. There is no real hope that any of these other two drugs will make a difference. The one we are taking had the best chance of making a difference and it hasn’t. The doctor doesn’t have any high expectations at all but is definitely willing to keep trying to fight this disease and can hope that maybe possibly one might make a difference. But a difference is not expected. And for that we are sad. Dr. L is sad. We were sad together. I don’t think there’s ever been a heavier spirit in our room. But, if we could ever feel love and compassion, we felt it last night. He definitely shared our heartache and burden last night!
I asked someone last night if they would just wrinkle their nose and make it all go away. They quickly responded they couldn’t do that but they would do anything they could do to make it better. My response was I know you can’t. The only One who can has chosen not to. And for that I don’t understand. And because of that sometimes keeping my faith is difficult. But at the same moment, the flip side of the coin is that God is our only hope. So when He is our only hope, how could we ever walk away? So I think as far as our faith, it will continue to wrestle with God’s goodness and God’s plans for our lives. We’ve always loved the verse that His plans are to prosper and not to harm us, to bring us a hope and a future. We get the hope and a future–that’s heaven! But what about here on earth…sometimes it feels like we aren’t prospering and that MS is definitely harming us. But we also totally believe verses that say God’s grace is sufficient and in our weakness His strength is made perfect. We also believe that in Christ, we can do all things. Sometimes we feel like we can’t do this, we deep down know that we will get through these challenges.
We did make four other medicine changes yesterday. Our medicine container is full already, I’m afraid we might have to buy a new one! I can definitely share some more medical details with you but I think for now, you have the picture of where we are. And I think that’s about all I can handle to write right now. I will post some more details later. But thank you SOOO much for being our prayer partners yesterday, we needed them!
