Tag Archives: Phone Pics

Through the Glass: It’s Beginning to GLOW in Here……

Proton_Beam3A

Yes, this is me in my Proton Beam Radiation Mask.  It was custom fit and molded to my face during the Radiation Simulation Session.  You literally have to be tied down.  The method is so precise that any motion would cause the beam to miss the tumor and hit something inside that you might not want to zap.  The lasers and pink tape are used for rough alignment.  Then low-level X-rays are used to “see” the four pins in my skull for fine alignment.  If it looks uncomfortable, it is!  And I go in twice a day for treatment.  Best thing, I get to take it home with me.  I’m going to make a shadow box and display it in my Living Room…….

The pressure from the Mask caused some swelling on the left side of my head to return. Ooops!  But it is better this week.  It’s stretched a bit and I’ve been working with the Technical Staff to get a better fit.

GLOW_Club

So I found out the details of the GLOW Club and will be attending on Thursday.  Hopefully I can see the accelerator and take picture.  I’ll post an update if pics are allowed.  Fun Fact:  you can actually see the blue flashes of the Proton Beam as it passes within the inter-cranial fluids.  Your optic nerve can detect the flashes so your brain can ‘see’ it.

Proton_Beam1

The focussed beam comes through the “screen” behind my head.  The screen is so big because it needs to be focussed across a wide range of angles.  It moves along the metal track for positioning.  Below, a longer view showing the hand grips for more stability against motion.  What you cannot see is that my feet beneath the blanket are tied down to the table also.

Proton_Beam2

I’m keeping my hair very short so I can moisturized my scalp to minimize burning.  In the image on the right, you can see a hint of the Surgery #2 Scar.

 

Below, a handy dandy summary graphic taken from the Mayo Clinic Website.  CLICK HERE for better viewing.

Mayo_Clinic_InfoGraphic_Posted

 

Through The Glass: Post Surgical Thoughts on Mis-diagnosis or Missed Diagnosis?

mayo_phoenix_hospital

Is there really a difference?  My Colorado Medical Team ignored an obvious abnormality that should have been dealt with 8 months sooner.  They refused to listen to my ophthalmologist, who was eventually the Dr that sent me to the emergency room, leading to the proper diagnosis.

So now I am left to deal with the consequences.  My Oncologist and the first Neurosurgeon assigned to review my case specifically told me there was “nothing to see here.”  Well I refused to allow that surgeon to perform my biopsy and moved on to someone that I could trust.  My new surgeon had the connections to get me to the Mayo Clinic, and that’s where I am.

MyQuickCut

I started with a close-cut, realizing that the second surgery would require shaving my head and would leave me with a nice scar to share with Scott…….and work not only on the tumor, but also an aneurysm that was discovered during MRI imaging.

The Aneurysm turned out to be too small to deal with now, but is on my list of items to keep and eye on. The ‘goop’ on my head is surgical superglue;  no stitches here.  I have no complaints about my Mayo Clinic Medical Team….I feel like they actually want to make me whole again.  I now have tiny metal plates holding my skull bone in place.

 

So I await the planning for my Proton Beam Radiation Treatments.  Hopefully home by May and settling back in to my normal life.  I’ll find out soon about the placement of the metal alignment pins for the Beam.

Looking forward to the future, how do I feel about my Boulder Team’s Ability to monitor possible tumor regrowth and that aneurysm? That I will explore with the Social Workers here……..

Through the Glass: Post Surgery

MayoMug_2019

After 13 hours of surgery; 90% of my tumor removed (excellent for a brain tumor); and 5 days in the Hospital….All I have to show for it is my Mayo Clinic Mug!   I did get released on New Year’s Eve and had that time with my Family.  One final thing I can say about the surgery is that my brain is functioning differently and my visual and audio perceptions are different;  not reduced or degraded, just different.  I will continue to explore this issue during my recovery.  Although my traumatic brain injury was planned and controlled, there are still ramifications I’ll be dealing with further down the line.  How will this affect my Artistic Vision?

What I have also experienced is the highest level of health care service EVER IN MY LIFE!  I want everyone to have this level of care!!!!!!

On January 23rd I start my Proton Beam Radiation Treatment.  Last year a friend of mine died from Esophageal Cancer.  The Proton Beam treatment was an option for his cancer that was never offered to him, because it wasn’t covered by his insurance.  I AM PISSED that he didn’t at least  have the option.