Wednesdays Dr Visit

Today was not at all what I expected. I had a horrible night sleep, even visions in my head and dreams are shaking and wobbling now. Who knows, maybe I had a seizure in my sleep. I woke up at 8:15 and thought “OH NO she moved my appointment to Atlanta at 10AM!” I tell Skip, we are out the door and arrive just on time. I do not look at anything along the way, but as e near, I’m feeling the feelings I don’t like.

Skip walked me in and I am zapped. No energy in my legs, hands and arms and I have barely enough energy to walk down the hall, curl up on a table and lay my head down. I picked drawing blood from my port if that tells you how bad I felt. They asked if I had taken Ativan yet and I said no, I wanted untainted vitals and blood work.

As soon as they did their thing, I popped one and within 10 minutes started feeling a little better. Dr. May came in and we talked for a while. Her theory on my visual wobbliness was the most sense anyone has made yet. I’m not really sure what she said, but I was thinking YES! That is IT! I just like figuring things out.

Can you guess what’s next? My vitals and blood work were beautiful. Perfect BP, temp, weight, pulse, and even my blood looks awesome. So last week I was pretty low for me on platelets at 70, and today they are 199? That does not even make sense. Red and white looked good to so now she is there contemplating chemo for Friday. This would be the 3 week cycle, it’s aggressive and I’m already freaked about having another massive seizure. She wouldn’t admit me, but I would stay for everal hours after the infusion was complete. I mean I could throw a rock out the window and hit the actual hospital, so I guess that works.

Lastly we have to figure out the Ommaya draw. Dr. Kesari wants the pressure taken yet no one knows how or even has the equipment to do so here on the East Coast. Plus, I’m scared, and she was also concerned, that it could cause an on the spot seizure just by messing around up there. SO, we are doing something unexpected. We have an appointment Tuesday with Dr. Dunbar.

I know I let her go a few months back, but she is the best here in Atlanta for what I have. She hands down agreed. We need someone here who can read these scans and help call the shots. I love Dr. Kesari, don’t get me wrong, but Dr. May’s part is currently stable, but my brain is causing mad havoc. We both need someone to explain this to us in a way we can understand and fight it. Every day that passes, my brain is worse. I’m sleeping all the time now. I can hardly stand for more than a few minutes and my vision disturbances are amplified to something worse every day. My brain is getting beat up by these tumors and we have to have another plan. And it WILL NOT be IT MTX unless someone can give me some overwhelming eveidence that intrathecaly it would be the best option. My research says nope.

Anyway. So. At the moment:

We now have two seizure meds, Xanax to tolerate their mean side effects, an antidepressant, and a stash of Ativan to stop seizures.

Friday will be where the fork in the road starts. High dose Alimta and Carboplatin will be given. It either works and my syptoms lessen, or it backfires and now I have this drug in me for the next 28 days. Basically at this point, what do I have to lose. I don’t think I’d make it 28 days without it, and my options are kind of dwindling.

Part of me says take the extra week and decide, part of me says get it over with. I don’t know anymore. I have no clear voice telling me the way to go. No one really knows, it’s all just a shot in the dark and hope for the best kind of outcome.

Well, I hurt, so I’m going to bed. Love you all and I’m sorry I haven’t responded to all of your messages and stories. I’ve been moved to tears by many of them, and just don’t have the energy or words. Some of you have shared deep things and how you’ve come through them. Thank you. Your love, encouragemtn, and prayers are always lifting, even when I’ve still got my arms crossed like a little bratty kid sitting in the corner. Just how I am right now.

When I asked my doctor for an antidepressant today, she explained she couldn’t believe I had not needed it before. But then we both giggled and agreed I’m a positive junkie. I’m just naturally positive. So I hope this works at least to get me back to a happy location. We shall see…