Back in April, I had seizure as I was getting ready to leave my yoga class at the community college I was attending. I was talking to my friend, and suddenly I started stuttering, and then lost my speech completely. As this was happening all I could think was "Oh, I should tell her I can't talk... but wait I can't talk!" and then I blacked out. When I came to, they had called an ambulance and my tongue was swollen because I had bit it during my seizure and I was really confused! The ambulance took me to the ER, where they did a CT scan, which came back abnormal, so then they did an MRI and found multiple lesions, the largest of which was located on the left frontal lobe and told me it was either MS or a brain tumor. They set me up an appointment for the next day with a neurosurgeon and prescribed me anti-seizures (Keppra, no it doesn't make me grumpy).
We met with the neurosurgeon, who was very nice, and decided before they cut my head open that they should cover all the bases to make sure it wasn't MS. So, she ordered a lumbar puncture to test for that, which was... uncomfortable. It also gave me a bad headache. But it was the least invasive procedure they had! (Un)fortunately? it came back negative for MS a couple weeks later. Those weeks were probably the most agonizing I have experienced so far because we didn't have a for sure diagnosis yet. When the spinal fluid results came back negative, the neurosurgeon recommended that we go to Seattle (we don't have intra-operative MRI here in Boise) to remove as much of the tumor as we could. I was told at that time that because they didn't observe any enhancing on the MRIs that it was probably low grade and not malignant. I was also told I could sleep through surgery.
We went to Seattle in June, and my surgery was at Swedish Medical Center (best on the west coast for this kind of thing it turns out) on the morning of June 8th. I was nervous, because despite what the neurosurgeon in Boise had told me, when we met with neurosurgeon in Seattle two days earlier he informed me that I would indeed have to be awake due to the location of the tumor. The anesthesiologists did their best to comfort and assure me but I was still scared! Turns out all I remember is them calling my name a few times right twords the end of the surgery when the swelling got so bad I stopped responding. When I woke up I initially could grasp weakly with my right hand, but that went away by the end of the night. I had supplementary motor syndrome on my right side from the swelling, so I could feel everything on my right side but I couldn't make anything move; I was completely paralyzed. The surgeon assured me that this was temporary.
Good news though: they were able to completely remove my tumor! Yay! Bad news: it turned out to be malignant after all. In the center, on the parts the MRI couldn't see and really could only be diagnosed with a biopsy. It was hard for it to sink in that I had cancer... it still doesn't seem real. I met with the neuroncologist in Seattle, and he asked me since there wasn't one available in Boise where I live (the sucky thing about being from a small city I suppose) if I was okay with traveling to and from Seattle for MRIs every 3 months for him to monitor my progress. I agreed that it would be best for someone who only dose this to handle it. We decided that we would aggressively treat it, which means radiation and an oral chemo pill, Temodar. I also attend speech, occupational, and physical therapy twice a week to make up for the deficits that were caused by the surgery and SMS. It's been a little over a month since my tumor was removed and I've regained full range of motion in both my limbs, but the commands take a little more focus and effort to do, especially in my right leg (the tumor was located closer to the part that controls the leg).
I'm about halfway through radiation treatments now. About a week and a half ago, I noticed my hair was falling out... within two days I had lost all my hair in a big patch on the top of my head, right around my incision, where they were shooting xrays into my brain. At first I got upset because it happened so quickly, but now it's just another thing to deal with, haha. Oh, remember how I said that the initial CT/MRI showed multiple spots? I guess they were nothing, except one on the right side, which my neuroncologist thinks may be the start of another tumor, so they're also treating that, and the passageway in between the left and right hemispheres where the cancer could have traveled. Get it all out is what I say! As for side effects, when I left the hospital I was on dexamethasone, a steroid for swelling in my brain, but they had me on a taper and by the time I started radiation I was off of it. Well, a couple days in, I woke up on morning and threw up and thew up, I couldn't hold anything down, not even water. I met with the doctor that day at the radiation clinic (after I thew up in their hallway...) and they said it was probably the radiation swelling my brain again, so they put me back on the dex and I haven't had and nausea since.
As for the Temodar, the only side effect I'm having is I get some pretty bad joint pain in my knees after I take it, and that only started last Wednesday night. I've been taking 5mg tablets of oxycodone before I take the temodar, which seems to help, but I feel like it's just another medication I have to take on top of all the others.
Anyway, that's my story. Looking at the others on here, it sounds pretty similar to all of your guys' experiences, so I guess that it's good to know I'm not alone.