Epilepsy Monitoring Debrief

Welcome back to the next Thriving Not Just Surviving blog post. Its been a very long past few weeks. A very special thanks to my wife, Maureen, for contributing to the blog during my hospital stay.

Most of you are already probably aware of my hospital stay in the Epilepsy Monitoring Unit. Unfortunately, we were unable to provoke any seizures during the stay. This clearly was not the outcome we wanted. Provoking a seizure while undergoing video EEG monitoring would provide the neurology team with valuable information that could aid in identifying the best possible treatment for my seizures. Nevertheless, I was recorded 24 hours a day for seven straight days and no abnormal brain waves were recorded. Some epilepsy patients always have abnormal brain waves, even during periods of non-seizure activity. Based on the findings, I only have abnormal brain waves during periods of seizure activity.

As far as moving forward with my epilepsy, my oncologist and neurologist want to perform additional testing to check for autoimmune epilepsy. You might remember that we tested for this when the seizures started back in February 2018. However, its possible that we tested to early and that there was not enough immune activity to show up in the test results. Now that I’ve had multiple seizures over the past 6 months its possible that the test results may come back positive. I could type several pages explaining the complexity of autoimmune epilepsy, but I’ll wait until we complete the tests for this. We’ve added an additional neurologist to my medical team who specializes in autoimmune epilepsy and we’ll be leveraging his expertise to assist with the testing as well as treatment if the results come back positive.

I know Maureen already provided most of the updates regarding the hospital stay, but I will mention that it was by far the most difficult hospital stay I’ve had to do. I think the primary reason was not being able to leave the room because I was wired to the EEG the entire time. Moving around the room was difficult and I won’t even get into not showering for the duration. It was a great lesson in patience and enduring the lack of comforts from home.

Prior to beginning the monitoring on Tuesday, July 24 we had a lung cancer scare. I began experiencing minor chest and back pain on Sunday that began to worsen towards the evening. By Monday morning it had become painful to breathe. These were the exact same symptoms I exhibited prior to my lung cancer diagnosis. In an attempt to avoid the situation worsening I was taken to the emergency room. A CT scan showed a very minor pleural effusion (fluid in the lungs), several enlarged lymph nodes, a fracture of my right scapular, and bone fragmentation throughout both shoulders from the seizures.

So what does all mean? At the worst case scenario, it could mean that the cancer is returning. Best case scenario, it could mean that I was fighting a minor viral infection in the chest and the lymph nodes were slightly enlarged as part of the immune response to fight the virus. I think that this is the likely scenario as I was running a very slight fever for a few days.

To ensure every precaution is being taken, my oncologist performed a liquid biopsy on Thursday. This is a blood test that looks for concentration of cancer cells. If the concentration of cancer cells is increased, then it’s likely the cancer is returning and we will move forward with additional testing and treatment. At this point there is no reason to panic as we are being overly cautious with this.

Next Steps

We’ve returned to Kansas City for the short term and we are waiting to hear back from the neurologist about a date for completing the testing for autoimmune epilepsy. We hope to have the results back from the cancer liquid biopsy within the next 10 days.