Team May at Your Service! 70 minutes total! (Not at Emory!! lol)

The last time I blogged, was about 2 days ago. I’m pretty sure today is Wednesday, 5 full days since I had the seizure. I’ve come a long way with the anxiety and stress of having another, but so far with a little therapist help, prayer and medication, we have been able to ward them off and keep me somewhat sane.

I will not lie. I had a mnor, itty bitty up, the past couple of days, but only with the assistance of caffeine. I’ve realized it gives me a good 20 minutes of conversation, and then I’m completely out again. Which is better than Saturday and Sunday, but nowhere where I want or should be by now.

The ride to Northside this morning seemed to take an eternity. I was madly dizzy, light was too bright and there was no way I could look out the window. I did however make myself a scrambled egg this morning, so take the wins as we can.

We slowly walked into the Tower realizing I should have brought the mommy stroller as I could not let go of skip. Funny, in a different way, I was in the same position exactly a year ago, but because of deabilitating pain, waiting for Adryamycin to work. Now we wait on Alimta.

I walked in and was immeditately checked in and sent to the back. No waiting in the waiting room for an hour. Pleases me to be called back at my appointment time. The lab assistant brought me to draw blood and boom, that was done. At Emory, another 30 minute to hour wait just for that. They walk me to the back and I see Carol, one of Dr. May’s nurses! I almost cried and we hugged and then Troy pops around the corner and oh my goodness, I was home. I cannot tell you how awesome it felt to be surrounded by this team of love buckets. They were my LM nurses when it all first happened and always just had positive experiences with them all.

They brought me to a room, we turned out the lights and someone reaches in and flicks them on! Everyone shouts “NO!” and Shelly’s face is in shock. She is Dr. May’s Nurse Practioner (I think) and a super serious love! I was so happy to see her too. Finally Dr. May came in and I almost lost it. I tried not to show the tears well up, but I’m almost sure hers were too. It was so awesome to hug her and know I was in the best place now.

We explained she really didn’t miss much, just going from clear scans and fluid to ugly scans and clear fluid. She did say it was no longer just on the outer parts of the meninges, but pretty well inside. She agreed there were a many number of things that could be attributing to the “drunkenness” and that it would be really hard to tell until we weened off of some things. Her goal is to get me off steroids first. VERY slowly over the next 4 weeks. If tolerated, she would like to drop the Keppra down to a 500 twice a day dose. She ordered a PET that will be done Tuesday so that we can make sure the systemic disease is still stable, and that 12 weeks was not a good idea. (I never thought so). We did labs and ran tumor markers and hope to get those in a few days. I will see her Wednesday to restage the systemic disease and figure out where I need to go from there. Lots of options for systemic disease.

I am going to shoot for an MRI of the brain before the next dose of Alimta Carbo to prove it’s working. It’s in a 4 week period, so we may get pushback from insurance, but hoping not. We know cytology is a fail as I had yet ANOTHER negative cytology result, making that three, techinically declaring me LM free. Funny, huh? I will see my radiation oncologist on Tuesday also to have a “hey what’s been going on” while I’m there for the PET. He’s not a neuro oncologist, but I’m hoping him and Dr. K can be buddies and do whatever they need to do. I trust Dr. Simon and love him to pieces so really this has always been my dream team, just something made me think I needed Emory. Misguided answers? Frustration? Who knows at this point. I could go back and read it, but what’s the point? The past is in the past, and we live day by day. Today was not the best physically, even scared myself walking as I’m so incredibly weak, but today was one of the best doctor visits I have had in a very very long time.

Skip and I swung by midtown to pick up CDs from my favorite medical records guy and headed home. We decided I needed caffeine and lunch and since everyone had Tin Lizzy’s when I couldn’t eat anything at the ER that is where we went. I PIGGED out! We sat outside in the shade, and it was open to the restaurant so the AC added a little cool breeze. We joked we were in Santa Monica except we couldn’t get out Tuna Tartare Tacos. HAHA! Instead, Southern Comfort Tacos and the biggest bowl of fried pickles, along with unsalted chips and cheese dip. It was perfect and I had enough alertness to make it home.

I barely made it to the top of the stairs, laid down, and out like a light I went, waking up a good hour and a half later in a puddle of drool. I needed that. I opened my eyes and with my head on the pillow everything is always still. I could look around, light didn’t affect me for that brief moment, and all was right with the world.

I’m now sitting in bed, typing this as fast as I can as my head begins to hurt again. Trying so so hard to be positive. It’s hard these days. We all have to face the end at some point, and I hope mine is later rather than soon. I want to keep helping others through their battles, I want to watch my kids grow up, I want to take care of my husband the way he takes care of me, I want to laugh with friends, and cry with those I love when they need my shoulder. Life isn’t always fair though. Taking every day as it comes, defeating anxiety and fear best I know how and remembering how blessed I truly am to have experienced the miracles we have witnessed already.

Just a little more God? Please? I know I don’t deserve anything, but #teamnadine sure does.

XO