Learning to Life with ChemoBrain

Sometimes I feel like I am living in an episode of the t.v. show House. Each doctor I go to has a different theory, test, diagnosis, medication; but, the true test comes with time, a wait and see method of medicine. Living with unknown illnesses is like when your eyesight goes bad for the first time; you don’t realize how bad it is until you fix it. You might notice something is wrong but you just learn to live with it.

This is the way I have been living my life for years. Constant headaches, memory problems, fatigue had become a daily part of life until February when I looked at my life and realized things needed to change. My fatigue had overcome me and I was sleeping 14 to 16 hours a day. There was no energy left to feel emotions, to do homework, to love my loved ones. School had become overwhelming; I fell behind quickly and seemed I just couldn’t get ahead. So I went to several doctors hopeful for any diagnosis, I just wanted to be able to live my life again. I really just wanted to be able to be the best wife, friend, and student that I could be.

I was diagnosed with thyroid failure which led to a few other health issues, and over the next few weeks began to be treated. Most of the symptoms began to disappear, and I was brought to tears the first time I was able to remember what it felt like to be “normal.” I became skeptically hopeful that things were going to get better soon. As I began to feel energized, I noticed I was still having migraines and school still seemed really tough. Shortly after, I was diagnosed with ChemoBrain.

ChemoBrain is a cognitive impairment that occurs in cancer survivors whom received non-localized chemotherapy treatments (i.e. treatment for blood cancer) with one particular chemotherapy drug. At least this is what they think causes this new phenomena. Basically, things that used to be second nature, word recall, multitasking, memory, and processing, are now very difficult for me. There is no cure for ChemoBrain but this week I started taking an experimental drug used for narcolepsy in hopes of improving.

I have bad days and good days. On bad days, I feel like I am trapped inside my body, like my brain is tired, and I just can’t think. But, my good days bring so much hope. Sometimes I get frustrated and just plain tired of dealing with all my health issues, and I can only think that those around me get tired too. But, then I am reminded just how precious life is and how blessed I am to be here. I have to remind myself that life isn’t about me feeling good all the time, but life is about bringing glory to God and making his name remembered.

I used to hide behind my intellectuality and had felt that my spiritual life had become based on intellectual thoughts, after all that is what I study. But, now I have been stripped of my mental abilities and I am once again reminded of God’s amazing grace which prevails over my many imperfections. And, it is His abounding love that has supplied my energy, especially on those days when my body aches and fatigue overcomes me. It is His joy that has supplied my emotions and literally kept me from falling into depression.

I am prideful person and it is hard for me to show my vulnerabilities. But, I have been exposed to those around me in my everyday life; they have seen strange side-effects from irrational emotions and physical aliments, to just plain incompressibility or mental inability. It is embarrassing times like these that humble me, and remind me how that I am surrounded by people who graciously love and support me.

Spring Break

We didn’t do much for break but rest. It was nice. And, since I had a bunch of energy and was feeling better, finally unpacked all the boxes and decorated a little around the house. The house now feels a little homier. I am looking forward to and preparing for my big trip to the Czech Republic that is coming up.

Happy Birthday Mark

Today is Mark’s birthday! I feel like a lousy wife because I didn’t do anything like plan a huge surprise party, like he did for me. I’ll step it up next year. Mark had been so amazing these past few months, when I haven’t been feeling well. He has been taking care of all the housework for me. Being ill has really brought us closer together. Happy 23rd Birthday to my amazing husband!