I got mad at Clay. There. I said it out loud. I said it. I got mad. In one of the early days of our diagnosis, I started to write a post about the unity we’ve been experiencing since this happened. I actually said, “I think we’ve had our last fight ever. Why would we ever waste time fighting again?” And I believed it. God immediately gave us incredible unity when the news came. We were saying the same things, thinking the same thoughts and we were in total agreement. “The two shall become one” had a whole new meaning. We were truly operating as one person. And, we still are. But, some of the stress has started to settle in. Clay is on a steroid, and they warned me from the beginning that it would make him irritable. Well, it didn’t……until yesterday! Ha. All of the sudden, he got his panties in a little wad and, guess what happened? I did too.
So, if you’ve been reading this blog and thinking that we are anything but two very wretched people, let me tell you that you have been wrong. Without the Lord and the power of the Holy Spirit, we are nothing. We are selfish, impatient, ugly people. God has been so good to completely empower us to walk in His grace. But, this morning, we were a little cold. And, I regret it so much. Today was one of the hardest days we’ve had, and in our selfish nature, we let space come between us over some silly little things. The truth is that the reality is starting to hit us. That’s why today was so hard. It felt so real. So final. So true. We are really here at MD Anderson and we are actually discussing Clay’s health. It’s hard to believe sometimes.
The morning started with Houston traffic. Oh my. It took us an hour to get there. We got Clay a huge, calorie loaded smoothie and went to see the Neurosurgeon. Dr. Weinberg has been so wonderful. He showed us the MRI’s again and we marveled at how successful the surgery was. He remembered how miserable Clay was and he was very pleased with how well he is doing now. The nurse came in and removed Clay’s staples. I was laughing at first and joking around about him “manning up,” but I stopped laughing pretty quickly when I saw how uncomfortable he was. Yikes. No pain meds. They just pulled them out. I never counted the staples, but there were a bunch. We made it through.
Then we met with the Neuro Psychologist to complete cognitive testing. The doctor interviewed us together but he wouldn’t let me say anything. He asked Clay a series of questions regarding how he is recovering. It was interesting to hear what he thinks. There were a few very difficult moments as he struggled to make sense of some things. They are telling us that most of the symptoms he has now are from the steroids and are normal for recovery from this type of surgery. They should pass and he should get back to his normal self soon, but it is difficult to experience. You just constantly find yourself wondering if this is permanent or if it will really pass.
The Neuro Psychologist took me in another room to talk about the questions he asked Clay and to get the real story. When he started asking me questions, I just couldn’t hold back my emotion. My mind went foggy and I felt like I was having an out of body experience. “Am I really sitting across the table from a Neuro Psychologist right now?” In that moment, I felt like Peter when he was walking on the water. I was looking at this doctor, just two feet across from me, but in my peripheral vision, there were these huge waves rising all around me. It was as if I was surrounded by darkness and waves that were ready to crash on top of me. I could hear the voice of Jesus saying, “Just look at me. Just keep your eyes on me.” So, I just did that. I reminded myself that He is working and He is here.
After we discussed Clay for a while, he asked me how I am doing. Wow. How do you answer that? This is what I said, “Yes. God made me to be strong and independent. My 17 year, high pressure career prepared me for the responsibility I am carrying right now. I am very accustomed to being in charge and being responsible for a lot of people. So, I can handle it. God has been our strength. Our faith is strong and we believe with all of our hearts that He is doing something great. He is clearly working on our behalf, so we are not afraid. But, it hurts. It’s hard. It feels very hard to believe at times.” Then I told him about my blog and he was so astounded. He said something like, “Your story is helping other people.” Amen. That’s what we pray.
When they finished the test, Clay swallowed down a quick lunch and we headed to the Radiology department. They were waiting on us because we were running late and we were also running low on energy. The Radiologist was great. We liked him immediately. A few doctors, now, have explained that Radiology is not just a science…it is an art. So, the doctor you choose has impact on the success of your treatment. The group here at MDA is 10 Radiology Oncologists who solely radiate brain tumors. They don’t do anything else. Our Radiologist is a professor and is personally involved in 3 clinical trials right now. These people are experts. We are in the best hands possible. I’ve prayed so hard that we would be able to do treatment at home, but right now, it seems like coming to MDA is going to be our best decision. We haven’t made up our minds, but we are leaning in that direction.
God is teaching me not to box Him in. I am specific in the way that I pray, but I always tell the Lord that I want His will. I lay out my desires (i.e. to be at home for treatment) but I follow it by telling him I want to be in His will. When the Radiologist walked in the room, I felt like we were going to decide to come here, but it took me a while to accept it. In fact, it took all evening. I just cried while we talked the Radiologist. He was kind with us. He did tell us some important things:
- There is nothing you did to cause this tumor. These tumors are completely random and we have no idea what causes them. We do know that there are certain factors like environment, diet, exercise, etc, that have absolutely no impact on them and are not believed to cause them, but we don’t know what does. So, release yourself from any responsibility. You did not do this to yourself or cause this in anyway.
- This cancer does not act like other cancers so there are a lot of differences in how this will be treated and how it behaves from normal cancers.
- It is for certain (based on pathology) a Glioblastoma Stage 4. Of course, I asked for the scale and 4 is the worst. We joked about Clay always trying to be the best. He is so competitive. Although we basically already knew this, it was like we were hearing it for the first time, all over again. This is a rare condition and the location of Clay’s tumor is even more rare. The treatment plan will be very specific and will require a great deal of expertise.
- Clay’s overall health is very important right now. While he does not believe that there are specific dietary factors that will have an impact, he did stress that Clay needs to be very healthy in order to survive and to respond well to the treatment. I told him that we’ve started juicing and eliminated sugar and he agreed that those are good decisions. He wants Clay to put on as much weight as possible. He has gained some weight since we came home from surgery. Yay!
Dr. Sulman did a wonderful job of explaining the process and helping us understand the truth of our situation. He told us that he would completely understand if we decide to have treatment at home, but he can’t recommend a doctor there. We have a big decision to make, and although it seems pretty obvious, I’m just not ready to commit. But, I do know that God is at work and I trust His plan. If we end up in Houston for 6 weeks, then I believe it is because He has something to accomplish in us or through us that can only be accomplished here in Houston. Treatment is Mon-Fri for 6 weeks in a row. We could come home on weekends, but we’ll be here 5 days a week.
By the time we left the hospital at 4 pm, my head hurt so bad that I could hardly keep my eyes open. We walked down to the valet and sat in two chairs to wait. After a few minutes, I realized that we were both laying back in the chairs, staring into space, totally unaware of our surroundings. I was thinking, “We probably look like a sad couple who just found out they have cancer.” I don’t want to look like that. I want to demonstrate the power of God in every single moment. We’ve had so many opportunities to share our faith, already. All of these doctors and nurses have heard us talk about the Lord and how He is sustaining us. I’m so thankful that God is able to speak through us right now. One of the research doctors came back to our room after she had left just to tell us that we blessed her in her time with us this morning. She said the nurses were out there talking about us and they were blessed by our story. Now, y’all, that’s just cool. It’s cool to think that in our weakness, He is strong. God is demonstrating His power so clearly.
The car came and when we first got in it, I wasn’t sure how I would drive all the way home. But, then Clay started helping me. He did the GPS, he called the kids, he googled the restaurant we wanted, he set up a conference call with our parents so we could tell them about the day. I was energized just watching him do these simple little things because he did them effortlessly. It was so encouraging to see him doing so well, even after such a long day. It was the first time in a while that I think he felt better than I did. We told our parents about the day, and before I knew it, we were at Pappasito’s. I love their fajitas! So, we picked up dinner and brought it back to my cousin’s. They have a beautiful home we’ve been staying in. We had dinner at their table with the kids and we just talked about the day. As I started telling them the situation, the peace came. I felt a total peace. Maybe it was the flour tortillas, but anyway, I felt peace. Clay is very calm and peaceful about the decision, too. Thank you, Jesus.
We go back early in the morning for more tests and to meet with the Oncologist. We’ll let you know if there is any new information. She will be discussing clinical trials with us, so it should be another interesting day. Thank you, Jesus, for walking with us. Thank you, Holy Spirit, for being our wisdom. Thank you, friends and family, for praying continually. God is hearing Clay’s name so much right now. He loves us and He is answering. Thank you!
P.S. We made up!