As someone who has been pretty healthy all of my life until recently, I haven’t spent much time thinking about healthcare.  I’ve always had employer-provided insurance. Clearly this has been a hot topic in the news of late and I’m paying closer attention as it could impact my short and long term care.

Recently, I heard the story of a woman who switched insurance companies and was then no longer able to see her neurosurgeon any longer.  You heard that right.  She was no longer able to see the doctor who performed her brain surgery, to keep him in the loop with her health so that he could continue to be involved in her care.  She wound up  lapsing in her care and her tumor regrew to the point where it was inoperable. This story was told to me by a neurosurgeon.

I also recently heard the story of a woman in a clinical trial who was unable to continue in the clinical trial because she moved from one state to another and the new state had different legislation about participation in clinical trials. This story was relayed by a doctor involved in oncology clinical trials.

None of us likes to think about the possibility that we might have an illness or require short or long term disability in some way.  But I went into the hospital one day and had brain surgery three days later and now I have radiation and chemotherapy treatments in my future. Anything is possible.

Even the seemingly small things that will be in whatever healthcare bill gets passed are important. We should all be paying attention, regardless of our individual political views.

 

The last week or so has been full of travel and doctor’s visits.  I’ve learned about radiation therapy and the differences between photon and proton therapy.  I’ve learned about chemotherapy. I’ve learned more about brain tumors in general.  Did you know that May is Brain Tumor Awareness Month?

I’ve also learned that more people in Philly get the Key and Peele A-A-Ron reference on my shirt than in other places.  Go Philly!

There were a few more fun things from the brain book that I found interesting and wanted to pass along…

•  The claim we only use 10% of our brains is totally false.  We use it all and often multiple parts at the same time.
• Anarchic Hand Syndrome (AHS) is when a person no longer has conscious control of one hand and it appears to move on its own (think Dr. Strangelove or, I suppose, Evil Dead).
• There are 6 different kinds of aphasia (inability to produce and/or comprehend language).  The particular issue that sent me to the ER was called Production Aphasia – the inability to articulate words or string them together. It is caused by damage to Broca’s area.
• Einstein’s brain was removed after his death and found to be wider than normal and was missing a part of the deep groove that runs through the parietal frontal lobe. The area affected is concerned with mathematics and spatial reasoning, and it is possible that the missing groove allowed his neurons to communicate more easily.
• It takes more than 20 years for the brain to become fully mature.  Although we know teenage brains aren’t fully formed, it is good to remind ourselves of this every once in a while.
• The brain is a magnificent organ in general.  I certainly took mine for granted prior to A-A-Ron…

Lately I’ve been wondering whether anything I’m experiencing is normal.  Prior to my surgery, I had been living with a massive tumor, pressing on my brain for possibly two decades.  This is not normal.  After the surgery, I have a grapefruit size hole in my brain where A-A-Ron used to be.  My brain is totally free to do whatever it wants inside my head.  This is also not exactly normal.  There is a marked difference in my sensory perception after the surgery compared to before.  I tested this out fairly soon after the surgery by watching La La Land.  I had watched it prior to surgery, found it dull and boring, and didn’t even finish the whole thing.  After the surgery, I found the colors to be much more vibrant and the music to be much more engaging.  I still didn’t think the movie was that great, but my experience of watching it was different.

Since the surgery, all of my senses have awakened or heightened.  First I noticed colors and sounds.  Then I noticed smell, specifically when I could smell the fresh fish while walking near the Potomac River. Then my taste buds exploded. Then my sense of touch became more noticeable.  Now, because of this new multi-sensory awakening, every experience is a new a experience for me.  Anything I do for the first time since surgery is like I’m doing it for the first time because I’m so much more alive now, or, to put it in the opposite way, I was so dulled and stifled beforehand.

I wonder, though, whether my before or after sensory experience is equal to what everyone else experiences.  I will never know the answer to this question, as everyone’s  experiences are based on their own brain’s processing of the stimuli in the world around them.  I’m just curious.  Have I been missing out all these years?  Or is what I am experiencing now something different from what everyone else experiences? I have no idea.  I do know that sitting in a park, listening to the birds, feeling the sun and/or the breeze, and being in that moment is divine.  I know I want to jump in puddles in the rain. I want to go to shows so I can listen to live music and see bands play. I want to experience everything I can and live in the moment as much as is possible.  And I encourage you to do the same…because you never know what tomorrow is going to bring. It really doesn’t matter whether what I’m experiencing is normal, because I’m going to take full advantage of it anyway.  But I still wonder…