We started the trial drug a few days after everything changed. After I finally understood what ‘choices’ I really had to make. We did a couple cycles of that and I was just in the hospital all the time. There was so much that I understood now that I just hadn’t known before. I never realized we might run out of real options. I never realized that the cancer wouldn’t go away just because I got older. I didn’t like knowing all that. But I also didn’t like NOT knowing so much about some other things either. Like dying.
I didn’t know how that worked or what it felt like. And I didn’t understand if I would know when it was coming. If I had a fever, I worried. If my blood pressure was too low, I worried. If my labs weren’t the right number, yeah, I just kept worrying. The worry got so bad that it felt like I couldn’t breath sometimes. Mom said that I was having panic attacks and that a lot of people had those when life felt out of control. I started taking a medicine when I would feel like I was about to have one. It would help me calm down and help me not feel so worried even though my mind was still thinking about it.
This summer I worried a lot and momma cried a lot. When I would worry, Momma would always tell me to focus on the good days — or at least to find one thing in the day that was good and focus on that. She would also remind me that we would get through the bad days together. When momma would cry I would tell her all the same things.
We did two cycles of the trial drug and then we scanned. The scans showed less cancer than before and for the first time in months I felt like I could breath. I stopped being afraid of dying all the time, I stopped asking questions about it and I stopped worrying about it. I told mom that I would keep doing this treatment forever if it worked. And I meant that.
I had pain in my leg for most of the next few cycles. It was from an infection and not from cancer so once we found the right antibiotic the pain went away. The other thing that happened when the infection got better was that the chemo cycles didn’t hit me so bad. That all meant I was in the hospital less and playing more. Last week we had scans again and saw even less cancer before. I am so excited that this drug was working.
When I would have a panic attack or pain, momma would always sit next to me and put her arm around me and pray. She would pray for me to have peace and to know that God was with us. The thing was, I was starting to wonder if anyone was even listening to her prayers. Momma told me that she didn’t really understand how God worked. She didn’t know why sometimes he would get involved in life and other times he seemed not to. But she said he was always with us. Always. That he would sit with us in every moment of our lives and every moment after. That he would even sit with us through death. That actually made me feel a little better – to stop thinking about God as someone who either fixed things or didn’t and to start thinking about God as someone who was just always there. Someone who would never give up on us.