I suppose I only update my blog when I go to the neuro-oncologist. But that does not mean I am not dealing with my brain tumor. I still think about and deal with it daily. How could I not when I continue to have seizures, side effects from the surgeries and medication and take anti-epileptic drugs two times a day. I had a neurologist appointment earlier in the month where she increased my dose of Vimpat yet again. I had two seizures during the week of Thanksgiving. I was frightened since they were more severe then they have been in the past few months, but I was consoled knowing I had a scan December 21.
The night before my MRI I did my usual prep. I picked out clothing that did not include any metal and started to take out all my body piercings. I never realize how many (12!) I have until MRI time because I never take them out. I left two in because they are fairly new (6 months or so). The next day when I got to the MRI suite I went to the bathroom to take the last two out. I got one out with a bit of a struggle. I laughed to myself thinking how awful it would be if I could not get it out. I went to take the last one out and I could not get a grip on the ball. This was no longer a funny matter. I started to panic thinking I would not be able to get my MRI done that day. I went to K, who was in the waiting room. He attempted to get the earring out with no avail. We started googling body piercing shops, but could not find any. He decided to go to Rite-Aid to see if we could get tweezers or some other tool to remove it. I was called into the MRI prep area. I frantically looked around for something that could help me get it out. I put on a latex glove and ta-da the earring was out. Thinking back it was hilarious, but in the moment all the pent up nerves and panic came out. Getting into the MRI felt like an accomplishment. I slowly drifted off into slumber as the machine clanked and pounded away.
By the time I was out of the MRI my neuro-oncologist appointment was just 10 minutes away. Good thing I only had to go from Floor 8 to Floor 5. I had yet another new fellow, who was nice but way too cheery. She was nice enough to tell me the MRI was STABLE after only 5 minutes of coming into the room. What a relief! But I still had a list of questions for the NO. The MRI being stable and "looking great" were the first words out of my NO's mouth. I feel much better hearing it from her. But her next words were about her great concern about my continued seizures- ah!! She proceeded to have a very serious (hand on my knee, major eye contact) conversation about the urgency of having an epilepsy surgery. I felt like I was in the same place as I was two years ago. This surgery looms in the air and will not let me move on with my life. I have braced it by doing follow up testing and getting opinons, but I also block it out as much as possible. When my seizures are less frequent or severe I can block it out very well. But then I have doctors constantly urging me to "consider" it. I feel like I am back at square one. According to my NO this will greatly improve my quality of life and give me a possible freedom from seizures. It is so hard for me to imagine going though another surgery. I feel like cannot escape the possibility of this surgery. I was ready to ignore this whole surgery conversation and m ove on with my life (well until the next MD brings it up) until K began urging me to at least look into the surgery again. So I made an appointment for NYU's epilepsy center, since I really liked them when I got their opinion last time. Luckily the appointment it no until Jan 31st because I really cannot deal with making this decision. I wonder how long I can hide from this.
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