Have you ever had a period in you life where it seemed like everything you prayed about seemed to be getting worse? Well, that is where I have been for several weeks. I was physically exhausted and mentally frustrated from trying to keep all the balls in the air. The question formed in my mind of just how long could I keep this all up. I was just praying that somewhere, somehow, God would give me a break from something. Little did I know what I was asking for.
I had just been to Fayetteville on Monday and left thinking that medically everything was going just fine. Then on Thursday afternoon, I received an unexpected call from the clinical trial nurse. They had received the lab results from my blood test, and my creatinine level had reached an unacceptable level; I was to stop taking the medicine immediately and in five days be retested. Based on those results, we will decide how to proceed with treatment. God, this is not the break I was looking for.
A few months ago, I was looking for any new information on LDK378 and came across a blog by a young mother who had just started LDK378. Earlier in the week, I decided that I would check her blog to see how she was doing and found that she was still struggling with the side-effects of the drug. Thinking I would help her out, I sent an e-mail describing the ways I had found most effective in getting through the day. She responded with a thank you e-mail and also mentioned she was having trouble with headaches. I have, as well, and I let her know. Since she is the only other LDK378 patient I have talked to and some of our other side-effects were similar, once I found out about my creatinine level, I thought I would see if she had seen a change in her levels. She responded to my question that, thankfully, she has not, and then gave me some unexpected advice: Enjoy your time off of the medicine and use it as a time to rest and physically recover. She was right.
After reading her advice, I realized that for the first time in four years, I am not taking medicine to fight cancer or the side-effects of those drugs, no pain meds, no antibiotics for pneumonia, no medication to help with nausea or intestinal issues, and no meds for blood clots. I also don't have cancer. I have been able to go through the days not ruled by the medicine and watching the clock to see when I could eat. I have been able to sleep in later this weekend instead of waking up early to keep on my medication schedule. We have been able to go out and enjoy a movie and dinner without me taking pills in my pocket. It is amazing that in just four short years, I have forgotten what life without cancer is like.
While enjoying this break, I have also been reminded that when I began taking this medicine, we knew that it was probably not something I would be able to take long term; that like the Crizotinib, there would come a time that it would begin to fail or cause toxicity problems. I also knew that, just like the Crizotinib, God would not allow it to fail until a better medicine was available. Have we now reached that point, or is this just a little bump in the road? I don't know, but I do know that God wants the best for me. If His best is for me to continue this medicine, even on a reduced dose, then that will happen. If His best is for me not to continue on this medicine, then we will continue on this journey knowing His best lies on whatever path He directs us. I also know that when the time comes that His best is no longer available on this earth that then, and only then, my journey will end, and I will go home to receive His very best.