Tag Archives: Mayo Clinic

Through The Glass: Passing the Halfway Point

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I’ve completed half of my Proton Bean Treatments.  Wooooo Hoooo!  So I’m sharing one of my husband’s digital images of:  Argentine Giant (Echinopsis candicans).  Happily blooming in a median at the Mayo Clinic.

My Film Cacti Photos Coming Soon!

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

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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.

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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.

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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.

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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.

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Through the Glass: Random Thoughts

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      Lots of Random Thoughts to catch up on.  Hope I’m not repeating myself…….As you can see above I am starting to work on learning to smell and taste again.  Right now I can smell nothing.  And without a sense of smell all you can taste is: sweet, sour, salty and spicy (hot).  So that’s all I can taste right now. This exercise begins with Roses, Lemon, Eucalyptus and  Clove.  My ENT surgeon said to try two rounds, but the second time add scents from aromatherapy that are important to me.  And Just keep adding scents that are important to my sense of taste, or that I enjoy.
      I am not allowed to BLT (bend, lift, twist).  I have been cleared to swim, but I’ll start with aqua-size when I get home.  And Dr Bendok (my neuro-surgeon) prescribed ballroom dancing to work on my balance.  He said that he’s found patients fail at normal PT because it’s boring and they don’t stick with it. He’d had a patient who’s balance portion of the brain had a tumor,  But the patient never had a problem with balance because he was a ballroom dancing instructor.
      I haven’t said much about Bernard Bendok. He proves that you can be the BEST at what you do, without being a jerk!  He has a warm, engaging personality that puts you at ease.  When I needed the second surgery, he thought I need convincing (which I didn’t), but he said if his sister had the same problems, this is what he’d want her to do.  And All of the Resident’s that I’ve dealt with here have been great too.  Also I’ve been signed on to all of the medical studies for Proton Beam Radiation, and I will be a case study for the Mayo Clinic Medical School (for the surgical procedure).
      Also, did you know that there were so many types of MRI’s?  I have had 4 pairs of MRI’s (one before and after each procedure).  I’m so used to it now that I go into a deep meditative state and almost fall asleep.  But I have a series of Angio-MRI, FIESTA MRI and Stealth MRI with and without contrast.  Also throw in a few CT Scans……I’ve had MRI Part 5 (first half) leading into my Radiation prep.  I’m sure there will be a second one after Radiation for the Brain Tumor Board to reviewBy the way, my Radiation Treatments start on Wed March 13th. Twice a day (early morning and late afternoon).  Hopefully I’ll be able to have the technicians take some picture and I’ll have those next time.  Read more here if you are interested in the technique: https://www.mayoclinic.org/departments-centers/proton-beam-therapy-program/sections/overview/ovc-20185491
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I’ve had a Ghost Hunting Tour planned with a friend to the Queen Mary. for months now.  So that’s where I spent this past weekend with the encouragement of my Drs who thought it would be a good idea to take a break as I transition to Radiation.  WOW really proved to myself how much I can do physically.  I walked all over that ship (certainly more than the mile a day I was prescribed), including a 3 hour paranormal tour of the engine room.  My friend was recently laid-off, so I was happy that I could go and spend some time with her….cheered her up a bit and took me outside of my self for a while.  Did I see any ghosts?  No.  Did I have some interesting and thought provoking experiences?  YES!  didn’t see anything because the Queen Mary Spirits are primarily audio (They speak but don’t make apparitions).  I had wanted to connect with the :Singing Lady’.  Next time I will try singing to her.  Getting back to my vocal exercises this week.
      And Finally, time to start making appointments with my Boulder Drs for follow-up in May.  I’ll also be back at the Mayo end of July. First thing I’ll need new glasses before I can even think of going back to work.  And then not before June and only part-time to start.  You may have heard that my employer DigitalGlobe) had massive layoffs because of the loss of a satellite  between Christmas and New Years.  I still have a job waiting for me (and they want me back soon).  No one from research, where I work, was laid off.  But they expect loses because of low morale.  I’ll deal with that when I get back…….If you’ve seen those satellite images of North Korea….They were our images.
That’s it for now……..

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

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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.

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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: Now for the Knuckle Ball

As you read this post I will already have been in surgery for several hours………..

In keeping with my earlier Baseball Reference, we move on to the famous Knuckle Ball Pitch.  As you read this I will be entering a second round of surgery.  The first was successful as far as it went.  But the location and geometry of the Tumor require a second entry point on the side of my head behind the left eye.

Below my surgical pre-visualization image………And following the Dylan Thomas Poem……with the most memorable lines highlighted

“Do not go gentle into that good night”

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Do not go gentle into that good night

Dylan Thomas1914 – 1953

Do not go gentle into that good night,
Old age should burn and rave at close of day;
Rage, rage against the dying of the light.

Though wise men at their end know dark is right,
Because their words had forked no lightning they
Do not go gentle into that good night.

Good men, the last wave by, crying how bright
Their frail deeds might have danced in a green bay,
Rage, rage against the dying of the light.

Wild men who caught and sang the sun in flight,
And learn, too late, they grieved it on its way,
Do not go gentle into that good night.

Grave men, near death, who see with blinding sight
Blind eyes could blaze like meteors and be gay,
Rage, rage against the dying of the light.

And you, my father, there on the sad height,
Curse, bless, me now with your fierce tears, I pray.
Do not go gentle into that good night.
Rage, rage against the dying of the light.

Through the Glass: Post Surgery

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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.