Monday, February 18, 2019

Recapping the Seizures


Welcome back to the next Thriving Not Just Surviving Blog post.

I was hoping to use this post to briefly highlight the completion of round 1 of chemotherapy on February 7. It is true that I did complete round 1. However, on the evening of Saturday, February 9 I experienced 3 seizures as I was going to bed.

After laying down in bed I experienced an aura which is what a seizure patient sometimes experiences right before a seizure. For me it’s usually a déjà vu feeling, mind racing, and a familiar music or song playing through my mind. Overall, the aura can be very hard to describe, but it’s very important because it can help a seizure patient get to a safe place before the seizure occurs. In this situation it allowed me a few extra seconds to pull off my CPAP mask and lay back in bed before the minute-long seizure occurred.

After the first seizure ended there was a 15 second break and I experienced another 30 second seizure. With the help of my parents, Maureen was able to keep me from injuring myself during the seizures while my dad called the ambulance and my mom filmed the seizures. Ever since we were unable to record a seizure in the Epilepsy Monitoring Unit (EMU) our neurologist, who is also a trained epileptologist, has been wanting for us to record one of my seizures. A trained epileptologist can sometimes look at a video of a seizure and determine if the cause is epileptic or some other cause. We’re hoping that the videos we have will be good enough to make a determination.  

When I arrived at the hospital, they did a CT scan of my head and right after the scan I experienced another minute-long seizure. I struggled to breath during this seizure so they fitted me with an oxygen mask and moved me to the ICU where I spent the night. On Sunday I they performed a full brain MRI and I was seen by the neurologist who was working at the hospital. The MRI did not show any evidence of cancer or structural abnormalities that would have caused the seizures. These results were consistent with every other brain MRI I’ve undergone. On Monday I was discharged from the hospital.

It’s worth nothing that it had been 4 months to the day since my last round of seizures. It’s quite an accomplishment to make it 4 months between seizures, but it’s equally as frustrating. The silver lining is that these seizures were not nearly as severe. My shoulder did not sustain any damage and I am resuming my physical therapy this week.

We still don’t have a definitive answer yet to the cause of these seizures that have now been occurring for over a year now, but I think we are getting very close. That being said, I expect to continue with round 2 of chemotherapy on Thursday, February 28.  

Monday, February 4, 2019

Beginning Treatment


Maureen and I finally received the highly anticipated genomic testing results. As it seems with most of my medical tests, the results were a “mixed bag”. We did similar testing when I was first diagnosed two years ago and we completely “struck out” regarding eligibility for a targeted therapy for my specific cancer mutation. Fast forward to today and the best analogy I can give is that we reached first base on an infield error.

More specifically, the mutation that came back in the test results does not have an effective approved targeted therapy. There are a few clinical trials that are in the early phases related to this mutation and only one of them appears to be promising. This clinical trial is currently considered an “investigational” drug and has very stringent eligibility requirements. One of the requirements is that the patient has to have already undergone standard chemotherapy, which I have not had.

Therefore, Maureen and I have decided with the advice of our oncologist to do several rounds of standard chemotherapy and see how it goes. The scheduled chemotherapy regimen includes two drugs infused every three weeks. The plan is to do at least 4 rounds and rescan before the third round.

Fortunately, we caught the cancer early so there is a good chance the chemotherapy knocks out the cancer. The best-case scenario is to be cancer free after the chemotherapy regimen and also then be eligible for the clinical trial should the cancer return.

The first infusion is scheduled for Thursday, February 7. At this point, I’ve known about the cancer returning for over a month; so, I’m just ready to begin treatment and start fighting again. I know there will be side effects and the potential of increasing my seizure risk. However, I’m confident that my body will rebound as it has with every challenge over the past two years and I will continue with daily life as much as possible.