Updates from West Texas.
A lot has been happening over the past month. August was a whirlwind, that consisted of vacation, follow up appointments, cancelled appointments, rescheduled appointments, new adventures and quite a few struggles. In summary, August was HARD. It was hard physically, emotionally and I certainly felt like I had more bad days than good (some would argue this, but I struggled). Don't get me wrong, it wasn't all bad. I shined in my yoga practice and even ventured outdoors for a few weekends to begin introducing myself to sunlight again. I made it out to 2 yoga in the plaza practices and really enjoyed doing that, not to mention how good it felt to see the gains I have made practicing yoga. I even ventured out to make it to the pool for an hour. That's a big step as over exposure to sunlight typically induces seizures in me. I certainly paid for it later, but I'm glad I got to be out for at least a little bit.
The seizure activity in the month of August was emotionally and physically exhausting and probably one of the reasons that was not a good month for me. For those who are not aware, I was diagnosed with focal epilepsy earlier this year and have been struggling with seizure control for the last 9 months. Working full time and battling cognitive and absentee seizures has been a battle that I did not prepare adequately for. This is like the mile 20 point of the marathon where you run into that brick wall and literally feel like moving is next to impossible. Yet, like in marathon's, eventually you find your stride and hit your second wind and force yourself to move forward. It was at my last oncology follow up that I found the wind in my sails to push me forward and get me back on track. As I sat in the waiting room, nervously waiting to be called back to find out my MRI results and continued plan, I saw a sign hanging up at the receptionists desk reading "So far you have survived 100% of your worst days, you're doing GREAT". I can't tell you how much I needed to hear that and I really almost started crying in the waiting room of Southwest Cancer Center (thank goodness I didn't). The day only got better for me because when I met with my oncologist she informed me that my MRI looked really good and that she would see me in another 2 months for a follow up and MRI. Waiting on MRI results is probably the worst feeling in the world and in the cancer community we call those days Scanxiety days.
I also spent the month of August nervous about finding a new neurologist, but was able to locate a provider in the Amarillo area who accepted my insurance. After my past experiences with neurology locally, I was feeling down about the situation with my seizures and really worried that I wouldn't be able to find someone to help me sort the situation out. Since May, my seizure medication has pretty much been becoming less effective. When my seizure frequency started increasing and the bouts of nausea and headaches returned, I became nervous that the tumor was back. After getting my MRI results back as good, I knew the issue was that of ineffective medication and NOT tumor re-growth; much to my relief.
Last night, my aunt and I made the trek to Amarillo to meet with the neurologist earlier this morning. The visit turned out to be much better than I anticipated and for the first time, I walked out of the neurologist office not feeling frustrated about my current situation. I learned more in a few hours than I did in 6 months dealing with my previous neurologist. On top of that, my new neurologist flat out told me I was wasting too much money on medications that were not effective for me and stated that we will get me off the Dilantin as soon as possible. Weaning of Dilantin is a complicated matter because I cannot simply stop taking the medication. Since I am still having seizures, trying to wean off Dilantin would almost certainly result in an increase in seizure activity and thus have an adverse effect on my health. Instead, my new neurologist explained that we needed to slowly work my keppra medication up to the max dosage and then re-evaluate my seizure activity to determine the next course. She explained to me that if I experienced unwanted or severe side effects with the Keppra dose change, I was to notify her office so that we could work back down to a lower dose and change the dilantin for another seizure medication. I was given a specific set of diet directions to follow and a "seizure diary" to keep track of my episodes and medication changes.
I also received answers to the one question that I have been asking about for several months now....When can I run?!? The answer was simple and straight forward. When you have gone 6 months without a seizure, you can resume sport activities. While, this was almost a little disheartening, I am happy to FINALLY have a time frame to know when I can resume the sport I love. Unfortunately, I am not allowed to have ANY alcohol until I go 6 months seizure free as well, so back to the basics. I CAN, however, have my one cup of morning joe and as long as I limit the caffeine; I can have an occasional pumpkin spice latte (hey OH!). You have to take the bad with the good and just take it one day at a time, so I'll take those small victories and run with them.
Namaste, folks!
