Seizures and braining swelling and lumbar punctures, oh my! The fun continues with my brain symptoms. I am taking a seizure medicine just in case and am waiting to be seen by a neurologist in October to determine my seizure and driving status. I haven’t had any communication issues like the original episode. Some aphasia once in awhile (not being able to identify a specific word) but that is an ongoing issue more related to stress and my own getting ahead of myself, I believe. I did suffer a few severe headaches this week and my right eye continues to bug me. I’ve decided the best description is that it feels as if someone is constantly waking their hand in front of my eye. I can see through it, but it is distracting and can feel “shadowy” at times (when I get tired,especially.) My vision was great today until about 8pm. Not too bad. I also have a little trouble identifying specific letters at the ends of words I’ve typed. THAT is strange! So forgive any typos, proofreading is tricky! I did call my Radiation Oncologist this week about the continuing symptoms. Originally he was going to put me right back on steroids, but we know my melanoma oncologist wouldn’t like that because steroids lower immune response and we’ve got a good one going at the moment. (Which may be why I am having all these brain issues.) So both oncologists put their heads together and ordered a lumbar puncture (aka spinal tap) for me because my MRI didn’t show enough swelling to indicate the severity of symptoms I am having (my best guess about this is that my MRI was on Sept 3 and isn’t up to date enough to show the current swelling, but getting an MRI is tough unless you go to the ER,) my oncologists thing I may be having long term side effects based on a drug I took in early 2012 called Yervoy. Yesterday I found out at 9:30 that I needed to be at UAMC for my lumbar puncture at 10:45 (Danny was at work and I can’t drive.) We made it, by the skin of our teeth, both a bit upset about the lack of notice- I called them! A good friend covered the kids and I was too mad about the communication lapse to get very nervous! The lumbar puncture wasn’t too awful. Very odd and not comfortable, but not painful. They took 10ML of fluid and sent us home. I was on bedrest for 24 hours to avoid a spinal headache and that brought is to today! Danny has been incredible, as usual. The kids were especially wonderful the day they came home to a Mom who shushed them incessantly because of her headache. It’s been a rough week, but we hope next week brings answers. Thank you for the continued prayers and support. There are lots of side effects right now, but Danny and I have a lot of peace that they are more of a pain in the rear to deal with than dangerous. My oncologists have given us the same impression. I have a few friends dealing with VERY similar circumstances and drugs right now so we take comfort in comparing notes and theorizing and I am SO thankful to live in the internet age.

Really rough day. I am doing better tonight and figured I’d better send an update while my head doesn’t hurt and vision is working. I finished up the steroids (I was on a 6 day reducing dose of prednisone) and my vision and headaches had greatly improved. But Tuesday night I became symptomatic again and had the worst headache of my life.This thing trumped any migraine I’ve ever struggled with. I got some sleep but the headache hung on until about 7pm on Wednesday. I did get my radiation oncologist called. He spoke with my melanoma oncologist and they both feel my symptoms are worse than the swelling on the MRI (On Sept 3) warranted. So, they want me to have a lumbar puncture (aka spinal tap) to check that it is not a long term side effect of Ipi, a treatment I took in the spring of 2012, but can have long term side effects. I am waiting on a call to schedule that. The headache returned with a vengance today. Along with crazy emotional side effects.