Back in the game

It has been a busy week.  Lots of phone calls and emails to different doctors on the team to help assure me that they have this under control.  I try my best not to worry, and for me, the only way I can do that is to fully understand the situation.

The subject of my concern was the debate over chemo now with radiation, or radiation only now, and chemo later.  The initial plan was to do chemo and radiation, together, at Northwestern.

My insurance initially wouldn't pay for the chemo to be administered at Northwestern in Illinois, since it was out of network.  This began a frantic brainstorming session of possibly getting chemo in Wisconsin, and radiation in Illinois.  The logistics just wouldn't work.

The Tumor Board met and discussed my case at length.  They felt that it was in my best interest to go with the radiation first and chemo later, when I am back home in Wisconsin.

Since then, my insurance had agreed to pay for chemo at Northwestern.  So, I had to ask the question;  If chemo and radiation together was the plan from the beginning, and the insurance is willing to pay, shouldn't we consider doing it if it is the best plan.

The Tumor Board's decision was not based on whether or not the insurance was willing to pay for it.  What it did was give them time to examine my case more closely, and consider other factors.

One part of my case that makes it so unique is the amount of nerve involvement that the cancer has effected.  The cancer has completely overtaken my entire fifth, sixth, and seventh cranial nerves.  That is the entire sensory and muscle control of the left side of my head.

They have had cases of perineural spread, in the past, but none as extensive as mine.  In most of those cases, as the radiation begins to shrink and destroy the cancer, the nerves begin to "come back to life" as extreme and excruciatingly painful raw nerves.  The doctors considered this, and decided that (1) Squamous Cell Carcinoma responds best to radiation - chemo is only used as a cleanup, and (2) If Joe is going to be in pain due to raw nerves, do we really want to subject him to the side effects of chemo on top of that.  

I was warned that, in these past cases, this has begun in the third and fourth week of treatment.  I am already getting the sharp pains in three areas of my face.  I need to "brace for impact".  It sounds like it's coming.

In the end, I was satisfied with the plan, and 100% confident that they are working in my best interest to treat me the best they can.

One thing that I have learned in all of this is that each patient is unique.  The doctors constantly look at each case and develop the best plan.  Each plan evolves on it's own as more information is gathered as we work through our treatments.  There doesn't appear to be a set of cookie cutters anywhere around.  Each patient is one of a kind.

I am still so thankful for my team at Northwestern.

Ashley and Bridget are my morning radiation techs.  Sweet young ladies - always a pleasure to see them.  We have gotten pretty good at positioning me on the table the first try.  Treatment goes fairly quickly anymore.

I continue to be fascinated by the equipment in the room.  As I lay there, mask clamped to the table, they exit the room to take the X-rays.  You may recall that every time I am positioned on the table, they take X-rays to compare to the CT Sim plan, to make sure that I am in the exact position.  

I can hear the swish of pneumatic cylinders, and the clunking and rolling of steel wheels on a track.  A loud bang tells me that it is in position.  I can hear a soft vibration as the X-ray comes on, then turns off.  Then I wait.  And wait.  And, wait some more.  "Did we get on the first try?" I am thinking to myself.  Most times, small adjustments are made, and some times, not.

The sound of the X-ray retracting back to it's nesting place tells me that we are good to go.  

I would have to think that the last couple of treatments would have had a claustrophobic person squirming a little bit.  Position one is at about 10 o'clock on the left side of my head.  On these last couple of treatments, the nozzle is positioned about two inches from my left cheek.  I can see it right there.  The blue flashing light was something in the distance before, now I can see it at it's source. 

Position two is at about 7 o'clock on the left side.  It is completely out of my field of vision, so not intimidating.  But, it is always position two where I start to smell the mysterious smell.

I asked Bridget if she would take a couple of pictures of me on the table before I got up, and she cheerfully obliged.  Here are some pics.

This is me with the nozzle in position two.  As you can see, I don't have to get gowned up for the treatment like you do with MRI's and CT's.  That's why they go so quickly.

There have been some crazy musical mixes lately, IE;  ABBA - Dancing Queen, followed by Def Leppard - Pour some sugar on me, followed by Faith Hill - Take another piece of my heart, followed by Billy Ray Cirus - Achy, breaky heart.  The girls just shrug their shoulders and say, "It's supposed to be classic rock."  I wonder if they are starting to mess with me.

I've never been much of a music listening person.  It is always just background noise to break up the silence.  But, I do have to say that there was a time in my life when it was pretty cool.

I was a teenager in the late '70's, when music was starting to branch out into so many different forms.  There was disco, pop, country, folk, and of course, rock.  In San Diego, there was only one real rock station - KGB FM.  

During this same time, muscle cars and cruising was still the cool thing to do on Friday and Saturday nights.  East Valley Parkway in Escondido, CA was the place to be.  When you think about some of the greatest muscle cars ever built - Plymouth Roadrunners, Camaros, Firebirds, Chevelles, Dodge Chargers and Challengers - these were all ten year old cars that you could get for a song, when gas prices went from .25 a gallon to .99 a gallon.  And, the kids bought them.

Car stereos had also developed in these years, with trunk mounted amplifiers to power the 12" speakers that you took from your parents home stereo system.

Can you imagine 200 cars all tuned to the same radio station at the same time, blasting their music?  It was nothing short of amazing.  We learned a quick lesson in physics when it comes to how sound travels and quickly figured out that if you circle 25 cars, with their trunks open, and sat in the middle of the circle, it was like being in a rock concert.  Boston's - Foreplay/Long time, was the one we waited for.  Awesome segue between the two songs.  

I doubt kids these days do anything like that.  They would rather listen quietly to the earbuds in their ears, with no interaction with any other human.  They don't know what they are missing.  That kind of makes me sad.

Tomorrow is already Friday and the end of week two.  I meet with the team tomorrow, after treatment, to discuss how things are going.

My head is back in the game, and I am looking forward to what comes next.