joo-lie

July 19, 2013

God. it’s been a while. please pardon the typing – it’s been a while and my fingers don’t automatically go where there are supposed to. this keyboard has a numeric keypad that still throws me off kilter.

I’ll begin at the begin.-

First, Gabe, Jack, Anna Rosa, Larry and I got to go to Rockport over Spring Break compliments of a friend with a bay house. other than the fact there were no crabs (a favorite childhood memory), Gabe’s car broke down – permanently – on the way home, and our lanterns would not leave the confines of the centrifugal pull of this massive earth, it was a great few days away.

Image

I think the hardest part for Larry was leaving Samantha behind. He had just found her a week or two before – a Harley has always been a dream of his so we made it happen. The Honda he had been on really was too small for him. He named her Sam because that’s what I told him my name was when we met in NOLA.DSC_0290

At some point in April (aka “birthday hell month” – my mother, her boyfriend Max, Kim, Jack, Larry – there are more I am forgetting) the kids and I volunteered again for the MS 150 pitstop.

BP150 2013

Then my sister Katherine, dad, uncle schaack and aunt ximena all collided for a visit…

SI ExifSI Exif

Then, about the time we were infested with crazy ants (look it up) Jack was initiated into the National Honor society…

SI Exif

(Yes, those are piles of dead Ants)Winter Spring 2012 2013 456

And finally the Class of 2013 graduated.

966210_540558622672938_229467770_o

I’m not sure I ever got around to telling you all about my need for menswear. If you follow me on Facebook, you may remember me soliciting men’s ties. I thought about making skirts but with the outpouring I received I it became apparent that a mandala was in order. With the help of my Tia Ximena, my back porch is greatly improved.

 

So the bad news.

 

So, i skipped a bunch of doses. Too many pills. Too many side effects. My tumors started up again. My oncologist cracked the whip, I became vigilant and the growth slowed. Unfortunately, a month later they were growing again and dr. o decided they had lost their efficacy so I went on a clinical trial – Neratanib. the cool thing about neratnatib is that it crosses the blood/brain barrier and it was one dose of six of the tiniest pills i have seen. I could take them all at once and without water if i wanted.

The two month follow up MRI was not good though.

So I was taken off the Neratanib and sent to see my Radiation Oncologist – Dr. Lu. Jack and I spent an unexciting 4th watching the fireworks from the Shepherd overpass and then had a dinner of Jack in the Box tacos. Fortunately, both boys were with their dad on Saturday morning. I was having trouble sleeping because of the stress I was under and had taken an adult dose of ZQuil. At around 5:30 Larry heard me making strange noises and realized I was having a seizure. Seizures with brain tumors can be common not so much because of thei size of the tumors but because of the edema – or swelling. He called 911 immediately and the paramedics assessed me but opted to not transport me. I’m guessing my comment about how much I hated Memorial Northwest contributed to their decision. Nevertheless, by the third seizure, I was on my way to Methodist. There was a fourth upon my arrival and I remember exactly nothing – including arriving home sometime Monday – beyond that.

We were hopeful that the computer that sets up the pathways that eradicate all the tumor while leaving the healthy brain tissue alone would be done by now but I guess it’s a complicated model. In the meantime I have 2 anti seizure meds (steriods) that keep me wired enough to require 2 sleeping pills. Needless to say, I’m unpredictible.

Oh, and I cant drive for six months.

Crossing my fingers I can get my head zapped on Monday.

 

Advertisements