Anatomy class

It's been a few days since I last posted an update.  I've been busy every day, preparing to head south for treatment.  Kathie, Jamie, Quinn and Joe are going to have to do without me for quite a while.

I do feel guilty leaving the house in a state of construction.  But then again, our houses have always been under construction/remodeling since Kathie and I have been married.  We have purchased, renovated, and sold eleven houses over the years.  We were some of the first house flippers in the country!  Although, ours were never flips, they were always more of an "over-easy".  

The problem we had was that we always had to live in the house we were remodeling.  As soon as the house was finished, we would sell it, buy another, and start the cycle over again.  Our girls grew up under construction.  If you know Jamie, Kate or Jess, you might have picked up on some quirky things we all do.  For example, In our house, if you grab a drinking glass from the cabinet, you always blow into the glass before filling it.  This blows the sawdust out so that you don't get a mouthful on the first sip.  (We rinse glasses for guests.)  We also closely inspect, and sometimes sniff, dish towels to make sure that they weren't used to wipe up stain and accidently left on the counter.

So the house needs work that will just have to wait.  

Kathie's knee is recovering nicely.  It's only been less than three weeks since surgery and she is walking around the house without her walker.  She has pain, which is to be expected, but she is already light-years ahead in her recovery compared to her other knee replacement.  

So, back to the business of my treatment.  It's no surprise that there is a lot going on in getting this process in motion.  Coordinating with Northwestern, Marshfield, and the insurance company is serious business.  Luckily, each facility has a team of people that do this every day.  They have assured me that they are working on getting me the best care that they can.

Every Monday morning, the Oncology Team from Northwestern meets virtually with the "Tumor Board".  This is a group of doctors that keep an eye on all of the cancer tumor related cases that are in their facilities.  Dr. Akthar called me Tuesday morning, to say that I was the topic of conversation that dominated the meeting.  

Mine is the rarest of all of the cases (lucky me), so they have a particular interest in planning for the correct treatment.  Cancers don't normally attach to a nerve and continue to track only along the nerve.  Head and neck cancers of the Squamous Cell Carcinoma normally begin as an skin cancer that penetrates inward, past the skin and involve other soft tissue.  

Although we don't know exactly how mine started, the first evidence of it was a small mass under my left eye that was involving my infraorbital nerve.

Do you mind a quick anatomy class?  I've had a few people ask me to explain in more detail what is going on in my head.

To start, there are twelve pairs of cranial nerves - twelve for the left side of the head and twelve for the right.

If you were to see the cranial nerves, they would resemble trees with many branches.  Most of them originate in what is called the Pons region of the brain stem, then spread out all over the head and neck to give the feeling sensations and muscle movement of our heads.  Most of what is happening in my head involves the fifth cranial nerve - the Trigeminal Nerve.  (Designated by the roman numeral V)

The Trigeminal Nerve (V) is the largest, and most involved, of all of the cranial nerves.  It is about the size of your little finger when it originates at the brain stem, which I'm sure you can imagine is absolutely huge for a nerve.  It tracks along the inside back of the skull to an area called Meckel's Cave.  In Meckel's Cave, it branches off into it's three main branches.  The first is the Opthalmic Nerve (V1). V1 heads towards the temple area to give sensory around the eye, forehead and scalp.  

The second branch is the Maxillary Nerve (V2).  V2 runs horizontally to provide sensory for the lower eyelid, side of the nose, upper lip, inside of the nasal cavity, upper teeth, gums, and the roof of your mouth.

The third branch is the Mandibular Nerve (V3).  V3 Heads down towards the jaw bone (the mandible) to give sensory to the chin, lower lip, lower teeth, and gums.  It also provides muscle movement of the chewing muscles and half of the tongue.

Each branch continues to divide into smaller and smaller branches as it makes it's way through small gaps (fissures) and holes (fossa) in the various bones that make up our skull.

My symptoms started with my left lower eyelid feeling like I had worms crawling inside.  The left inside of my sinus was going crazy, too.  In hind-sight, we can see that was the Infraorbital Nerve being attacked by the cancer.

The Infraorbital Nerve is a branch of the Maxillary Nerve (V2).  As symptoms developed, I could literally feel the cancer moving along V2 back towards Meckel's Cave.  For whatever reason, it made a right turn and headed down through V3, causing loss of feeling in my lower jaw and unable to chew on the left side.  This all happened between mid-August and the first of November.  The November 12, 2020 MRI showed exactly that.

This started a two month discussion on how to identify and treat this thing.  They all agreed that a biopsy was the next step. Two Neuro Surgeons tried to come up with a way to safely get to the masses to get a sample.  On January 12th, were able to get a sample from under my left eye.  Pathology confirmed Squamous Cell Carcinoma.

I immediately met with Medical and Radiation Oncology at Marshfield, here in Minocqua.  The Radiation Oncologist, Dr. Lee, reviewed all of the latest MRI's and was concerned about two areas.  First was the mass under my left eye, and second was the mass that was following the Maxillary Nerve near the base of the skull.

The common cancer treating radiation therapy, that is available at most cancer treatment centers, is Intensity Modulated Radiation Therapy (IMRT).  IMRT uses gamma ray radiation to kill the cancer.  They can direct and guide the radiation to specific areas by aiming and adjusting the intensity.  The downside is that there is collateral damage to tissues around the cancer.  Usually, this is not an issue since soft tissue and bone regenerate quickly, but Dr. Lee was concerned.

Using IMRT, would most likely destroy my left eye, leaving me blind, which all things considered wouldn't be the end of the world.  His main concern was the mass following the Maxillary Nerve.  This mass is separated from my brain by only a thin layer of tissue and about 1/8" of bone at the base of my skull.  He felt that IMRT would definitely cause damage to my brain in that area, which could lead to long term neuro effects such a seizures.

He recommended Proton Beam Radiation Therapy (Proton).  The two closest centers are Mayo Clinic in Rochester, MN, and Northwestern Medical in Warrenville, IL. 

Proton therapy uses just the positively charged protons of an atom, and is able to deposit these protons exactly where they need to be, with little or no collateral damage.  I will be starting proton therapy at Northwestern.

Since January, the cancer has continued to spread.  From Meckel's Cave, it has now spread up the Opthalmic Nerve (V1).  My left scalp and forehead started iching like crazy, then all around my left eye, and if you can imagine, my eyeball itself.  My tear ducts were draining constantly.  I guess that is par for the course.

In my last blog, I mentions that my left eye was no longer tracking with my right eye and that I am now cross-eyed.  This has the doctors extremely concerned since there is no physical connection between V1 and Cranial Nerve 6 (VI), which is the nerve that controls eye movement.  

I just received my official treatment start date of March 15, 2021.  Can't wait to get started.