The Beginning - Part 1

Never in my wildest dreams would I have ever thought that I would find myself knowing this much about nerves and cranial anatomy, much less, be able to correctly pronounce them.  Terms like Ganglion, Foramen Rotundum, Middle Cranial Fossa, and Pterygopalatine Fissure and Fossa, along with bone structures of the skull such as the Zygomatic, Maxillary, Sphenoid, Temporal, and Mandible.

It's important for me to understand how it all works.  I believe an informed patient will make the doctor even better.  (I'm not sure that my doctors would agree.)

Those of you that know me as the one who may have taught you the art of troubleshooting a problem on a system or machine won't be a bit surprised that I approached this problem in the same manner.  As soon as the first symptoms began, I was on the internet researching, looking for the right "schematics" as I've done thousands of times in the past.  I took mental and written notes of every little detail to narrow down the cause of this issue.

I knew there was something wrong - something that was not going to go away on it's own.  This was going to be a journey.

Part of the reason for writing this blog is to help others by teaching them to (1) pay close attention to simple irregularities that may happen on your bodies - they could be the beginnings of something bigger, (2) don't procrastinate - when you see something unusual, get it checked out, and (3) stay on top of it - do your homework, learn about the issue, and stay informed.  

I've only known that I've had cancer for a week now, although this journey has been going on for over a year.  

My official diagnosis is; Squamous Cell Carcinoma tumor spread along the 5th and 7th cranial nerves.

Squamous Cell Carcinoma is typically one of the skin cancers.  Although, it is commonly found in head and neck cancers as well.  When found internally, it most likely started as an external cancer that infiltrated internally and, in my case, attached itself to a nerve and kept growing.  It could have began as skin cancer, or throat cancer, or maybe even cancer in the sinus cavity.  

This is where the story begins.

For at least the entire calendar year of 2019, I had a bump on my left cheek, just below my left lower eyelid.  I could feel it there, but it didn't hurt.  Mostly, it was about the size of a dime and pretty flat.  Most people never even noticed it, or at least never mentioned it.  That was until the Fall of 2019.  In the Fall, it started to grow and change.  I had at least four close friends that noticed it enough to bring it up and tell me that I should get it checked out.

Of course I did not get it checked out.  Going to the doctor has never been a huge priority for me.  The last time I had been to see a doctor was August 2014 for a complete physical, where nothing unusual was found.  I was the picture of health.

The bump vanished, for all practical purposes, in or around December 2019.  

Beginning the day after Christmas, December 26th, Kathie and I had the most horrible upper respiratory infection of our lives.  This lasted all through January 2020, and finally was over by mid-February 2020.  Could it have been Covid-19?  I'm sure it could have, but we will never know.

Around March 2020, I began having some crazy sensory feelings in my left lower eyelid and in my left sinus.  

One of the things that you need to understand, that went into my decision making, was the fact that I had no health insurance at the time.  If I had, I may have been more open to seeking professional help.  Not having insurance made the decision not to, even easier.  My gut feeling told me that something was wrong.

I got on the internet and began searching for affordable healthcare.  I quickly found that there is no affordable healthcare when you are outside of the Fall open enrollment period.  The best I could find was $388/month with a $12,500 deductible, and a $30,000 annual out of pocket maximum.  That's not insurance, that's robbery.

I called Oneida County Health Department, asking if there is a free clinic around, that I may be able to speak to a doctor.  No such thing exists up here, but they would referred me to Marshfield Clinic's Nurses Help line.  The help line is a group of Nurse Practitioners that are allowed to diagnose certain conditions, over the phone, and prescribe antibiotics and such.

For a mere $40 fee, the NP felt the symptoms had the basic signs of a sinus infection.  I was good with that diagnosis.  Basic troubleshooting 101 says eliminate the easy stuff.  The prescription, on the other hand, nearly had me drop to my knees in tears.  $158 for Clavimox?  The pharmacy tech pulled out her start phone, and in one minutes time, had me signed up on the GoodRx app.  She said, "That will be $8, please".  There's a tip for any of you that may not have prescription insurance along with your medical. 

I did a seven day round of antibiotics, but nothing changed for the better - in fact it was getting worse.  By this time, the crazy sensory feelings had me believing that I had worms crawling and multiplying in my lower left eyelid and my upper left lip.  It was nonstop.  I couldn't sleep with them crawling around.  I also began feeling pressure under my left eye, that was starting to give me a headache.

I called the Nurse's Help line again.  She suggested that I make an appointment to see a doctor.  I began to bock at the idea, but she was not letting me off the hook.  She said, "Oh, Colleen Mueller is taking new patients.  OK, I have you set up for 1:30 tomorrow afternoon in Minocqua.  Show up 20 minutes early.  Good bye."

I'll never know who that Nurse Practitioner was.  She knew that I would have put it off, and she wouldn't let me.  She is one of many that saved my life.

To be continued...