Friday's Update: Binders of Fun and MD Anderson is Better Than Disneyland

YOU get a binder of fun, and YOU get a binder of fun!

Binders, on Binders, on Binders

One of my "projects" was to make binders for the parents and the "important people" in the process. I've called it the "Binder of Fun." I believe if call things "fun" it makes it so.

Have you ever been asked in life, if you didn't do what you do now, what would you do? My answer is a professional organizer. Y'all, I may have taken this cancer to heart and am maximizing my opportunity to live my other profession, Professional Organizer Extraordinaire. I think I've been to Staples, Office Depot, Walmart Office Supply section at least 15 trips. I'm basically in heaven. So, binders. Let me list my binders:

• Dog Binder (our dogs went to long term boarding so I made a binder about their records, personalities, etc.)
• How to Be A H.O. (those are my initials - the guide of how to do the things I do for our family)
• Medical Binder (organizing all the documents we've been given)
• Jeff and Hanna's Binder of Fun

So, this week I've been slowly fleshing out the sections of the binders and filling them in. It's been fun. Okay, yes, I'm a dork. A big old dork.

Better Than Disneyland

I know that people (ahem, Amy) think that Disney is the best place on Earth. You're wrong. It's MD Anderson.

I cannot explain the feeling of confidence and of being in the right place with the right people. One of the things that I admire most about MDACC is the positivity of the PEOPLE around you. From the valet, to the barista pouring me a 6:00 am coffee with a smile and a kind and positive word, to the doctors to the other patients walking past.

It's amazing. It's awe-inspiring. It's confirmation that we've made the right decision to have the tumor de-bulked here.

Appointment 1 - Blood/Specimen Collection (7:45 am)

My first appointment as a patient at MD Anderson! We easily parked and found the right place with ease. The nurses were amazing and other patients were inspiring. It was efficient and quick. 15 minutes or less.

We had a little time until our next appointment in the same building so Jeff, Mom (Susie), Dad and I went to the cafeteria for breakfast. We went to the cafe and in the line to pay for food an employee was behind me. I decided to mine her knowledge and her recommendation, "the hot tray is the way!"

Appointment 2 - MRI (9:15 am)

We went to check in, and the lady checking me in was my new Tray's the Way friend! Connections! The MRI technician doing my scan ended also working the Brain Suite and he mentioned how my Neuro-Surgeon was his most favorite one to work with. He said she's amazing, down to earth, and had a great sense of humor. My kind of person - but I already knew that.

Biggest problem with the MRI machine - was the itch on my nose in the middle and the how much I wanted a nap. BUT - the MRI is what's being used to guide and plan my surgery so the phrase "Try not to move your head - like at all." Yeah, not conducive to a nap. I also now have a $1 Billion dollar medical device idea...but one step at a time.  Brain surgery, THEN make a billion dollar medical device.

So, trying not to move while an MRI machine shakes and jiggles you is cool. My MRI was the best carnival ride I've been on in awhile - and the technician was the best carnival ride operator - ever. And yes, you can see me smiling in the MRI.

Appointment 3 - Cortical Magnetic Stimulation (12:15 pm)

This was the coolest part of my day! We mentioned this was the scan to map out where the motor functions of the left side of my body get triggered. The goal here is to map out where motor functions occur and overlay that imagery on top of the MRI results from the morning and see if there are areas of overlap for #ToomaRemoova to completely avoid. They brought this technology into the operating room and used it during the "awake" portion of my surgery to confirm how aggressive they could be about #ToomaRemooval - each percentage of tumor removed the better - so I am truly a blessed person. Technology is amazing!

I was hooked up to some electrodes along the left side of my body and they used a magnetic device on the top of my brain. It was similar to someone clicking a ballpoint pen on top of my head in a million different spots. Each time they clicked it was mapped to a specific spot on my head - like a GPS pin. If the pin triggered a response on the electrode the pin is colored (white lots of activity and down to reds and yellows - like a heat map). If there was a pin but no response (grey pin head) - no motor function and safe to remove.

I thought this was a test where I was going to be asked to perform a task - like typing and we would see activity similar to a heat map. I offered to pull out my computer and start doing a few important tasks. I confused them. They finally convinced me to stop talking, not fight the process, RELAX, and just let the machine do it's job. Oh, passive - not active participation. I can do that. I kicked off my flippy floppies, crossed my legs, closed my eyes, and let the twitching begin. We got to see it all happen in real time! But, apparently, I don't relax well (anyone shocked?!) and I have it proven via brain scan. I DID tell the student from Canada (the real one - not North Austin) that a foot massage might help. He didn't try and I'm concerned that he's not as dedicated as he thinks he is his craft. A good doctor would have done it.

The good news is that there doesn't seem to be any immediate overlap, but we don't have the final plan yet. I'm good if they take their time and do this one right. They don't expect any loss of motor function because the test triggered further back away from surgical sections.

The MAY wake me up in the middle, because this doctor and this procedure will be done in the Brain Suite during surgery as well and the MRI machine. The Brain Suite is the coolest room in the entire MD Anderson campus.

Appointment 4 - Meeting with Neuro-Surgeon (1:30 pm)

We were supposed to end the day with a visit with my surgeon - Dr. F (she said I can fully name and photo credit her on Monday evening post surgery). Gnarly picture coming but I'll be smiling (because #drugs and #MissingFrontalLobe).

We reviewed risks (bleeding, infection, stroke, some other things but nothing that's changing my game plan of #EXCORCISETHEDamien).

She started the consult with, "I cannot cure you." This again, is not a shock or surprise - we've already know about Phases 2 and 3. We continue with this phased plan, I come back to MDACC in 2 weeks to meet with their team about treatment options and we enter Phase 2.

Appointment 5 - Anesthesia Assessment (2:30 pm)

Pretty much a dot your i's and cross your t's. You need to be checked in at 5:15 am and your surgery is scheduled to start at 7:30, and lasts 5+ hours. Any reactions to meds (no, but I haven't tried them all), my neck circumference (for intubation), and that was that. 

And then our weekend of family, friends, and fun started. We're still in full swing - leaving my parent's house shortly to head to MDA Rotary House for the evening. 

Might post some updates later - but I plan on seeing you on the all on the other side of surgery on Monday. I think Tuesday will be pretty laid back - no non-family visitors - mostly because they think I'll be nauseous all day and ain't no body got time for that. I have an MRI on Tuesday to make sure there's no bleeding (not expected) and then Wednesday / Thursday I'm hoping for visitors bringing me delicious things to eat. 

I am accepting prayers and well wishes, and any positivity you have to give. But you have to do it for 5 hours solid which is quite the commitment. But, you can do. I need you to.

#PeaceOut

#BeKind

#ShareThisStory

#PowerOfOne

#PowerOfOneMultiplied

#BTHODamien

#SpaceForREnt

#Damienated

#Lobeless