Jun 12, 2018 Latest post:
Jun 30, 2019
Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.
Thanks to Cousin Kris Hayden, for suggesting this awesome site.
So...here's the story.
Back in Mid-March, I felt a weird throbbing sensation in my right leg, while showering. It traveled up to my stomach, causing a spasm there, then wrapped around to my back. After a couple more episodes, I finally went to the E.R. on 3/25. They did a few tests, and couldn't find the problem. The next day, I was given a Holter Monitor (to measure heart activity)....and wore it for 21 days. In that time, I only had one episode, but at least it got recorded.
In the meantime, I was referred to a Spine specialist, and he did an exam, and ordered an MRI of my lower back. No issues were found.
He referred me to a Neurologist, and he also performed his regimen of tests on me. Ultimately, he ordered an MRI of my brain, so, that was done on 5/29 (in the NEW, cool , short MRI machine at South Shore, in beautiful Cudahy). Within a few hours of the exam, my neurologist called me, saying that they found a tumor in my brain.
The next step was to meet with the Neuro-Oncology Team at St. Luke's Hospital. I did that, alongside my awesome Social Worker/Cousin Kristi, on 6/5. We met with the Surgeon, the Neuro-oncology doctor, the lady who runs the clinic, my Awesome Patient Care Coordinator (Amy), a doctor in training, and a couple of others that wandered in. The surgeon immediately brought up the images from the MRI scan....of the Alien Inside Me (as I'm calling it), and he explained the process that they will use to remove it. Basically, they will remove 70-80% of it, intentionally leaving the remainder, so as not to get too close to the "good" areas. That remaining area will be treated, in a few weeks, with a regimen of Radiation and/or Chemo.
The surgery is scheduled for Thur 6/14 at 6:30AM....and I have to arrive at 5AM. Hungry, sleepy, Crabby Steve Will be in the house ! It is expected to take up to 4 hours, then I'll be transferred to the ICU...for an overnight stay. This will be my First stay in a hospital, ever. They will be sending me home on Friday.
But wait---there's MORE. I will be A W A K E during the procedure....and able to watch it on a 4K monitor. I tried renting one to to them, to lower my out of pocket costs, but they felt that theirs was more sterile....or something. I've already had a pre-op visit with my GP (general physician) to clear me for surgery, and I had the pleasure of a 4.5 hour Psychological Evaluation. Some may know that I minored in PSYC at Marquette. At times, I'm not sure if I was following..or leading the exam...but it was a mental workout nonetheless. ...and I get to have a copy of the results of it, so I've got That going for me. Further, both of the testing psychologists will be present in the O.R. during the surgery, having me perform occasional tests, using an ipad and fun flash cards. They even told me that some people Call their friends on the phone while going through these surgeries. I won't be. ...and I will NOT be doing a FacebookLive broadcast, either. Sorry to disappoint. I'll be Way too occupied watching the show on the 4K monitor....and I'm sure----asking questions...while trying to keep my head Totally still !
I have a pretty full day of tests and appointments on Wednesday, starting with a CT scan...then some blood draw/lab stuff...then a 3-hour long MRI...which will "Map" the surgical area....using a GPS-type system, as they explained it. Small, sticky metal thing'ees will be placed on my head to give them their coordinates of where to drill, cut, and jackhammer. Measure twice, cut once seems relevant here.
For now, let me wrap up this entry by thanking the Awesome support team that has stepped up. Both of my brothers (Joe & Scott), and their awesome wives, Christine and Merry, will be coming in from opposite ends of the country, to be with me for this experience. I've already mentioned Kristi; she is a Godsend. My church family at St. Luke's UCC has been Awesome, friends, colleagues and customers have also been coming out in droves. My family and I will all be staying at a hotel near the airport. They are staying through the weekend, which just happens to be Father's Day. We'll have some Great family time together...and I'm So looking forward to that. My sons, Jack and Will are all onboard with everything. Jack is in a small city in Iowa, with his national drum & bugle corps, the Blue Stars, as they are practicing for their summer of competitions throughout the country. He is a Section Leader this year (Proud Parent Moment), and has made the very mature decision to stay in Iowa this week. Will just took his Last final exam the other day, and will be a Senior next year at Franklin HS. Again----Super Proud Parent Moment. I may have him sneak in a dish of Leon's Custard to me on Thursday night. Can you get Brain Freeze after Brain Surgery ? I'm going to call care coordinator Amy...and ask.
Thanks for your support, prayers, and cards/messages.
No casseroles, please.....unless you want to try to rival my (spicy) cheesy potato recipe. Good luck with that.