Heroes

It's Tuesday evening, and I find myself in my new home away from - The Residence Inn, in Warrenville, IL.  I can see the Northwestern Chicago Proton Center from my window.  Unfortunately, it is on the other side of the I-88 East/West Tollway.

From the window, I can see an asphalt walking path, with split-rail fence, leading up Mill St. and over the Tollway.  I was excited to think that I could walk to the Proton Center, which is the first building that you would come to once you've crossed the Mill St. bridge.  I had to check it out. 

As I walked over for a closer look, I found an area with picnic tables, nicely groomed grass, and landscaping on either side of the path.  Next thing I knew, I was on the path, making my way uphill to the bridge.  That's when things began to change.

The nicely groomed path of just 100 feet back began to slowly morph into cracked asphalt with four foot tall weeds growing up through the path.  It got to the point that I couldn't even get through.  They should have put up a sign that read, "Funding stops here."  

I thought about going over to Harbor Freight Tools and buying a machete, but good sense and a lack of ambition put a stop to that.  It's only 7/10 of a mile if I drive.  There's plenty of places to walk if I feel energetic.

Yesterday, I got a phone call from a friend.  They live in the Chicago area, and have a summer home in Minocqua, WI - where I live.  We usually only see them during the summer, so it was a pleasant surprise to hear from them.  

We parted company in the Fall with some unaddressed tension and strain on the friendship.  Not to make excuses, but I wasn't at my best, and chose to avoid it rather than address it.  It has been allowed to fester for months now, and that wasn't fair to anyone.

I've spoken of friendships in this blog and the importance of investing time, life, and love into them.  These friends of ours have done that and more.  

With any relationship, there will always be misunderstandings.  We can all look at the same situation and see it from two completely different points of view.  It doesn't mean that one is wrong and one is right, it simply means that it has effected us in a different way than the other.  In this situation, our friends had no idea that I was harboring feelings of resentment.  How could they if I never brought it to their attention?

We met on the Riverwalk in Geneva, IL.  It was a beautiful day to enjoy the outdoors.  We cleared the air, and came away with a better understanding of each other, a resolution of the issue, and a promise to never let it happen again.  

These moments are important in life.  Don't make them wait.

Today was an unusual day at the Proton Center, to say the very least.  When I arrived, I found the waiting area with quite a few more patients that usual.  Ashley came out to tell us that there would be a delay of about twenty minutes.

This week I had noticed two new patients, who were both in wheel chairs.  Remember, newbees get the early shift, so they were scheduled at 7:00 A.M.  It stands to reason that it would be a little more difficult to help a patient onto the table that couldn't do it on their own.  The delay was understandable, and honestly, we really don't have any pressing commitments.

Normally, we patients come in, say "good morning" to each other, and settle into checking emails, or the latest news headlines on our smart phones.  There typically isn't enough time to start a conversation, since the process flows pretty quickly.

The delay was the excuse we all needed to open up a little bit, introduce ourselves, and start a conversation.  We shared our stories, and saw each other, not just as another cancer patient, but as a person with goals and plans for the future.  We are all at different stages in the process.  Some are near the end, and some are just beginning.  We shared the wisdom that we have gained through our own treatment, comforted the newbees, and gained strength from those that have been around the block.  

The twenty minute delay turned out to be over an hour.  None of us minded.  

I was called back to the treatment room, as the techs did their best to make up for every lost minute.  They pushed me into the changing room with a quick, "Wait here."  "Wait here?  I don't get changed.  Do I look like a newbee to you?" I thought to myself.  As long as I wear a tee shirt, I'm good to go.

That's when things went south.  

The alarm sounded, and the blue light above treatment #4 started flashing.  Doctors and nurses came running from all directions, carrying equipment, and pushing a crash cart.  All I know is that the patient in #4 was in trouble.  I'm sure that they practice for these situations, since everyone knew exactly what to do.  They stabilized him.  He would be okay.

We identify ourselves as cancer patients.  To some it is a badge of courage, while others see it as a burden to carry until the burden is removed.  For the patient in #4, it is one of many problems that he has piled on top of each other.  

He is one of the newbees.  I am going to make an effort to talk to him, get to know him, and let him know that we are all on his team.  That, I can do. 

We search for purpose in our lives.  We set lofty goals when we are young that we often laugh at as we grow older.  Sometimes we reach them, and other times we don't.

What if our entire purpose in life was just to simply give hope to a person that in that one moment had lost it?  Would you be okay with that?  Heroes are defined by a single moment.  Could you be that kind of hero?

"Rub it, rub it, rub it."

Friday's team meeting was disappointingly short.  But, honestly, there really wasn't too much say.  We are two weeks in on our seven week journey.  Protons have been placed and all we can do is trust that they are doing their job of killing the cancer.

After the treatment session, I first met with Lorena, my Radiation Oncology Nurse.  She began by taking my vitals and my weight.  It appears that I may have lost two pounds since last week.  I always laugh when it comes to losing or gaining small amounts of weight.  Think about it, a gallon of water weighs eight pounds.  If you drink a quart of water, you just gained two pounds.  Obviously, the opposite would occur if you relieve yourself.  So, two pounds it not a concern.

The concern about weight loss is the mask.  It has to fit tight to keep me in position, or I risk having protons launched into places they don't belong.  This seems to be a big problem for my fellow patients that are undergoing chemo at the same time.  My heart goes out to them.  In comparison, I have it pretty easy.

All vitals are good, so Lorena ushered me to the exam room where I would meet the doctors.  

Dr. Akthar was out again, so Dr. Hartsell stood in for him.  As of now, the treatments have gone according to plan.  I asked him about the nozzle position change in the first treatment position.  He explained the incredibly precise detail that the computer has been programmed specifically for me.  The amount of thought and planning that went into every aspect of treating my specific tumors.  One treatment may place the protons at the bottom of the tumor and the next may place them at the top.  Every move is made for a specific outcome.

Next Thursday, I will go through a new CT Simulation to see what changes have occurred.  I'm looking forward to a good report of shrinking tumors, even if it means crazy nerve activity.  

They warned that it is coming, and if last night is any indicator, nerves are starting to become active.  Random sharp pains in my forehead, cheek and jaw kept me awake almost all night.  I found that if I lay with the left side of my face buried in the pillow, it helps to suppress the pain.

"Rub it, rub it, rub it!", my mom would always say, when we fell and bumped a knee or our heads.  And, it does help make the pain go away.  I've passed on this family tradition to my grandchildren, Quinn and Joe.  You'll hear a bang from their playroom, a brief wince, and "Rub it, rub it, rub it" from their little voices.

Researchers in the UK have found that it is a natural response to our pain sensing mechanism.  When we sense pain, our brains send out a response to check it out.  We attempt to visually identify the problem, and depending on the visual results ranging from, no visual signs, to "Holy cow, I have a 3" laceration on my forearm", we take action.

In the case of no visual signs, we naturally rub, or sometimes shake the area.  What we are attempting to do is change the state of the nerve that sensed pain.  The UK researchers found that rubbing naturally feels good, and by stimulating hundreds of nerves around this nerve, the brain is overwhelmed by good sensation, and shuts off the pain receptor.

This also works with pressure, which I found helped to a certain extent last night.

The trouble with nerves is that they are incredibly complex organs in our bodies.  I used the analogy in a past blog of them being like trees.  They have trunks, branches, shoots, and leaves.  When you think about how they work by design, the leaves - the very end of the nerve that is near the surface - is the area that is designed to sense pain.  The trunks, branches, and shoots are there to communicate this pain sensation to the brain.  The problem that people have with chronic nerve pain is when something effects a trunk, branch, or shoot nerve.

Ailments such as a slipped disk, or a vein pressing up against a nerve, are issues effecting a branch nerve.  Branch nerves are not designed to sense pain, but they do.  Surgery is often the only option to correct the problem.

In my case, I have a cancer that has tracked along the trunk, branches, and shoots of my left fifth, sixth, and seventh cranial nerves.  The hope is that once the cancer is removed, the nerves will be able to go back to doing what they do - communicate between the brain and the leaves.  In the mean time, we don't know the extent of the damage to the nerves.  One concern of the doctors is that the cancer is actually protecting the nerves by shielding them from other contact.  Once the cancer is removed, I could have exposed nerves all over, that will react to any stimulation.  They have seen it in other patients with perineural tumors.  That's why they have warned me that it could be coming.  And, after last night, I am beginning to think it will be sooner rather than later.

When I think about my situation, right here and right now, I have it pretty easy in comparison to some.  If all I have to deal with is pain and sleepless nights, I consider that a win.  I am no stranger to pain.  It won't be easy, but I will get through it.  My 88 year old mom fell and broke her femur eight weeks ago, and is now walking with a cane.  If she can do it, I will do it.

The doctors have me in the "cure" category.  It's not to say that things could change and go south at any moment, but for right now, they are optimistic that they can kill the cancer and cure me.  They are the professionals, and that helps to keep me positive.

The other category is "palliative".  This is care that is given to provide relief of symptoms, to improve the quality of life for the patient.  In cancer patients, that means that they have exhausted all means to a cure.

How would I react to being moved from cure to palliative?  In the same way that I reacted when I found out I had cancer to begin with.  I will still wake up every morning with a smile on my face, thank God for a new day, and look forward to what He has in mind for me.  

Still being able to eat my breakfast bowl would be a huge plus.

I need to take a moment and thank Craig & Theresa for so generously allowing me to stay in their house for the past two and a half weeks.  It has been such a huge blessing.  

We make friends throughout our lives who enrich us in so many different ways.  I'm not talking about people we know, but people we go through life with.  People we have mutually invested time in.  People who love us with a true brotherly love. The Greek word is "Philia".  That is why Philadelphia is called the "City of Brotherly love."    

Asking is the hardest part.  I have found through this journey that, when you have true friends, they will be there when you need them.  Don't be afraid to ask.

Having that same relationship with family is equally important, and I am so blessed to have such a huge family that will do anything for me.  I love you all.

My goal is to be that kind of friend, husband, father, son, brother, uncle, and grandpa.  Just ask, I'll be there.

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.

Lots to think about

Yesterday was the fifth treatment, and the end of the first of seven weeks.

It started in the usual fashion of getting checked in and back to treatment room #4.  I asked the tech, Ashley, what the machine in the treatment room was called.  She said, "Oh, you mean the gantry?"  That makes sense to me since, typically, any moveable structure that can be equipped with tools or instruments is called a gantry.  So, I asked, "What is the part that the protons emit from?"  She replied, "It is just called the nozzle."  OK, so there you have it.  I was thinking it might be a little more high-tech, but nozzle works for me.

As usual, I predicted that we would get in position on the first try.  They locked the mask in position.  I scooted up, so my forehead was tight in the mask, and shifted my shoulders slightly to my left  They looked at the dot on my chest and said, "That looks good."  I slightly opened my mouth as they left the room.  Seconds later, I heard the buzz as they took the X-ray.  I waited for a minute or so, and they didn't come back.  I'm not allowed to talk through the mask, since it changes my position, so I laid there patiently as Van Morrison's "Brown eyed girl" played (3:05)

There is always a waiting time since there is only one Cyclotron and four treatment rooms.  The Cyclotron can only be used in one at a time.

I'm not normally a fidgety person, but having to lay in one position, perfectly still, for minutes on end is a little much to ask of anyone.  After Bruce Springsteen's "Born to run" (5:34), Ashley said over the intercom, "We're ready to start."

The door opened after the first position, and the other tech, Bridget, came in the set for the second position.  She said, "You nailed the positioning on the first try."  She could have left it at that and allow me to bask in my moment of glory.  But no, she had to follow it up by saying, "You'll never do that again!"

Friday is assessment day, where I meet with the team to see how it is going.  I met with Kim the RN first, who took my vitals and asked specific questions about any changes since treatment started.  Things like sore throat, nasal drainage, dry or burning skin, return of any sensations - she was fishing for things that might be related to the treatment.  I have noticed areas that have been numb for months are now starting to do crazy nerve things again - specifically the worm crawling sensation.  We took that as a good sign.

Next I met with Dr. William Hartsell MD.  Dr. Akthar is out for the week, so Dr. Hartsell was filling in.  He explained that all of the doctors review all of the patients in treatment, so that they are up to date on each individual case.  That was pretty impressive.  I had a few questions that I had the feeling would not have good answers.  Again, all I have asked from the beginning is for them to be straight with me and tell me everything.

Starting with my left eye.  This only began on Sunday, February 21, 2021- literally one month ago.  Saturday the 20th, my eye was fine, and the next day it was no longer tracking with the right.  The sixth cranial nerve, the Abducens Nerve (VI), is now effected.  The abducens nerve supplies the lateral rectus muscle of the human eye. This muscle is responsible for outward gaze.  

Without getting too far into anatomy again, the Oculomotor nerve (III) supplies all of the other muscles that control the eye.  They all seem to be working.  This is significant since, so far, the (V), (VI), and (VII) cranial nerves all connect to the Pons area of the brain stem, where (III) connects directly to the mid-brain.  The whole idea behind my treatment plan is to keep it as far away from the brain as possible, and kill it before it gets there.  If (III) gets involved, it would have a direct path to my brain.

What's worried me all along is that the cancer was always tracking along the nerves.  My question has always been, "What happens when it runs out of nerve to track on?"  Squamous cell carcinoma is known to be a very aggressive cancer, and it is very unusual that it hadn't jumped off the nerve track long ago and invaded other soft tissue and bone.  

It started on Cranial nerve (V) the Trigeminal nerve.  When symptoms started pointing towards Cranial nerve (VII) the Facial nerve, being involved, it made sense since there are three bridges between (V) and (VII).  But, there is no connections between (V) and (VI), the Abducens nerve.  How would (VI) be involved?

Long story short, the cancer has jumped the nerve track and has begun to spread out to other areas.  The good news is that I had my CT Sim and High resolution MRI's after the cancer began to spread.  So, the treatment plan includes those areas.  The bad news is that it took two and a half weeks to put the treatment plan together, so the cancer had a bit of time to continue spreading before I started treatment.

For about the last six weeks, I have been scratching the left frontal scalp area of my head, and driving Kathie and Jamie crazy.  "Stop scratching your head!  You're making sores on your head." they would say.  No, I was scratching my head because there are sores on my head.  The cancer had spread up to that area under my scalp and the sores are beginning to look like epidural squamous cell carcinoma.  They are targeting the cancer that spread under the scalp, and will keep an eye on the sores on my head.

Next question was, "Is there something going on in my Mastoid area, it hurts likes hell?"  Your Mastoid Process is the rounded bone that you can feel just behind your ear, and just above your jaw bone.  Many of us when we were kids, or as a parent, you may have had a kid with an infection of the Mastoid.  Pretty common.  A week of antibiotic and it's gone.  I've gone through four rounds of different antibiotics, and no change.  His answer gave me pause.

There is a lymph node just inside from the Mastoid that lit up like runway lights on the high resolution MRI.  It is the Posterior Auricular Node.  No one who is battling cancer wants to hear that it is in a lymph node.  That never seems to end well.  They knew it was there, it is a part of the treatment plan, and they have been blasting it for a week now.  They could also see the other lymph nodes in the area, and they were clear.  It sounds like good news - they have it covered. 

I had to ask him about the smell that I mentioned yesterday.  Whenever the protons are flowing, I get this weird smell, as it turns out, no one else can smell.  It is a reaction of the smell sensory glands when the protons stop close to the sinus area.  It makes sense since I could still smell it when I was outside.

My last question was more trivial.  "How many protons are being launched into my head on any given treatment - are there 12, or 1200, or 12,000"?  He said he would have to ask the Physicist, but would guess it is more like 12,000,000.  I suppose that when you think that a proton is only one part of an atom, there is plenty of room for 12,000,000.

I brought up the fact that my insurance finally agreed to pay for chemo at Northwestern, and should we consider it, knowing that lymph nodes are involved?  They decided on the plan to do proton first, then chemo later.  He didn't think that they would deviate from the plan and said that squamous cell carcinoma masses respond better to radiation than chemo.

I thanked him for being straight with me.  

Next, I met with my nutritionist (Oh, boy).  She asked what I have been eating.  I told her about my breakfast bowl, and to my surprise, she thought it sounded great.  She is all about protein during treatment.  She said that I should be getting at least 25 grams of protein, at least three meals a day.  She started naming off lots of examples such as nuts, beans, chicken breast, etc.  I can't chew anything crunchy, so that takes nuts out of the equation, so she suggested peanut butter.  I can't say that I have ever been a fan of peanut butter, and Kathie has been suggesting it for some time now, so I think I might have to give in and buy a jar.  Maybe I can put it on celery - no, can't crunch celery.  Ugh, I don't think I can handle eating right out of the jar.  Maybe on some ice cream - now we're talking,

Part of the problem is that, thanks to the involvement of the Facial nerve (VII), I can only taste sweet, spicy, and bitter.  You may find it interesting that the left (VII) nerve controls the taste of the middle half of your tongue, and the right (VII) nerve controls the taste on the tip (sweet) and back (bitter) of your tongue.  

"You should eat Mexican food", she suggested. "It is one of the highest protein menus out there, and you can taste spicy."  As it turns out, the Jalapeno Grill is less than a mile away to the North of where I'm staying, and Sergio's Cantina is less than a mile to the South.  "You should walk to one or the other for lunch every day."  Great idea, but I don't think I can afford that.  I'll have to do some shopping.

It was a day to process a lot of thoughts.  It was a nice day out so I took a walk along the Fox River.  I woke up this morning with a smile on my face, and an eagerness to see what's next.

Kathie and Jamie are both sick so I'm staying in St. Charles this weekend.

Men, listen up

You say it's your birthday.......It's my birthday, too, yeah! (Beetles - Birthday!)

Yes, today is my birthday.  Now, I'm not saying this to solicit birthday wishes - most of you won't read this until tomorrow, anyway.

For 59 years I have walked the surface of this planet, and for 58 years I mocked sickness and disease - it would never catch me.  I boasted that I had never spent a night in the hospital, except for maybe my very first night.  

I was blessed with good health. I was the guy that would rarely ever get sick, and when I did, I would recover faster than anyone.  When I left my company job to start a new life in Southern Illinois - semi retired, as a handyman, I looked at the cost of health insurance and rejected the whole idea as a waste of money.  

I saw how much money our company spent on health insurance for our employees, and on me alone.  In eleven years, I had only seen a doctor once, for a complete physical, yet the company paid for it every month.  I couldn't justify it.

Kathie begged me to get insurance.  Why should I?  I never go to the doctor anyway.  This, I realize now, is the flaw in my thinking.

A lot of guys, in general, think this same way.  Even if they have insurance, they only see a doctor when they absolutely have to - typically brought on by the constant "encouraging" of their significant other.

Who knows if I had been seeing a doctor for even annual check ups, if this might have been detected sooner.  I can 't help but think that if I had a regular relationship with my doctor, they would have sensed that, when my July MRI came back showing an "inflammation" of the infraorbital nerve, it was something that should be addressed immediately.

My team of doctors did everything that I would allow them to do, to diagnose this problem.  The truth is, I thought it would go away like every other ailment in my life.  Dr. Lawler said to me when reviewing the July MRI, "If you came in here demanding that we find out what it is, I have a battery of tests to perform.  But, if you want to wait and see, which you indicated you do, we can review again in 90 days."  I opted to wait and see.  All I could think of was, "How much is this going to cost me?"

Cost doesn't always come in dollars and cents.  What will this cost me in the long run?  The vision in my left eye? Probably.  That's not the worst thing in the world, but how will that effect my ability to work?  I love being a remodeling contractor.  If I can't do that, what will I do?

It's too early, and I'm way too optimistic to start thinking that I will make anything short of a full recovery.  If I can speak to the guys that might read this and think the same way that I have, I would say to get a doctor that you can build a relationship with, and get regular check ups.  I'll leave it at that.

Today was treatment #4.  Everyday, it is the same routine of check in, then we are escorted back to the treatment room - mine appears to be room #4.  The Technicians swipe our badge, then ask us to get up on the table.  The table is very narrow, maybe 14 inches wide.  The headrest is even smaller, maybe 3 or 4 inches wide.  

The trick is to lay on the table in the exact position that I was in when they did the original CT Simulation scan.  Everyday, I joke with the techs that we are going to get it the first try.  They lock the mask in place, and take an X-ray.  This X-ray is compared to the position that the planning program used from the CT Sim.  Invariably, they come in and grab ahold of the sheet I'm laying on, give it a tug in one direction or the other to change my position.  They take another X-ray, and repeat the process until it is in perfect alignment.

You might remember from when I did my CT Simulation, that I fell asleep, or at least dozed off a couple of times.  Well, it appears that my mouth was open during the CT Sim.  So now, everyday they tell me to open my mouth slightly when they are doing the alignment.

My treatment uses two positions of the proton delivery apparatus.  I don't know what it is called - I'll have to find out.  They set it in the first position, and leave the room.

They play classic rock to break the silence of the room, and today, we were about half way through Journey's "Don't stop believing" when the blue flashing light starting flashing, indicating that the protons were flowing.  This lasted all of the way through Fleetwood Mac's "Don't stop thinking about tomorrow", when the blue flashing light stopped.  

The techs entered the room and adjusted the apparatus to the second position and left the room.  The blue flashing light began at the start of Billy Joel's "Uptown Girl" and finished about 30 seconds (the intro guitar riff) into AC/DC's "Back in Black".

So, with the help of Google, I estimate that the first position treatment lasted about 5 minutes 43 seconds, and the second position lasted about 4 minutes even.  

There is a peculiar smell that emits while the protons are flowing.  It doesn't smell like burning hair or anything close to it.  I asked the techs, and they looked at me like, "Smell?  What smell?"  Google came up with nothing.  I know I'm not imagining it.  Or, at least I think I'm not.  

I asked to be moved to a later time slot when one comes available.  Next week, I will be at 7:50 a.m.  Oh well, it is 50 minutes later.  Beggars can't be choosers. 

Tomorrow, I have treatment first thing, then meet with the doctors, nurses, and a nutritionist.  Maybe one of them will know about the smell.

One down, thirty four to go

I was up early and ready to go this morning.  The Proton Center is about 35 minutes from where I am staying, so I had to be out the door at 6:25 a.m. in order to make it on time.  

Anyone that knows me, knows that punctuality - being on time - is very important to me.  If I tell someone I'll be there at 7:00 a.m., I am there at 7:00 a.m. - not 7:05 a.m. or even 6:55 a.m.  I like to be on time as a show of respect for the person I'm visiting.  You can set your watch by it.

When Jessica was in high school, she played softball, and karate.  When it came time to pick her up from practice, I would always ask her to tell me what time she would be ready to be picked up.  That means all of gear is stowed in the bag, she has made all last minute plans with her friends, and the only thing left is to get in the car when I pull up.  For karate practice, the time was 8:10 p.m.

One evening as I pulled into the parking lot, Jess and a couple friends were outside waiting.  As I pulled closer, they all started to laugh, pointing at me.  I rolled down the window and asked what was so funny.  Jess said, "Amanda asked what time it was.  I looked up and saw you pulling in, so I told her it was 8:10 p.m.  She asked how I knew since I don't have a watch.  I said, because my dad is here."

I arrived at the Proton Center at 7:00 a.m.  There were three other patients already checked in.  As it turns out, newbees get the early shift, so if you are there at 7:00 a.m. on a Monday, you are a first timer.  The Proton Radiation therapy seems to always go for seven weeks.  That means that every Friday, a group finishes their treatment, and every Monday, a new group begins.  By week two, other time slots will open and we will have an opportunity to move up.

I threw my I.D. badge lanyard around my neck and entered the main door like it was the back-stage pass to a rock concert.  A quick temperature check at the door, mandatory hand sanitizer wash, and I was off to the waiting area.  

One by one, the others were called in, until I was the only one left.  

"Joseph, come with me", and I was on my way to the treatment room.  Our I.D. badges have an RF chip in them that lets everyone know where you are in the building.  Yes, you are being tracked.  I suppose it's a good idea since there is a particle accelerator somewhere in the building.  You wouldn't want someone like me, that likes taking covers off of machines to see how they work, wandering around the building.

As I entered the treatment room, I saw my mask sitting on a chair next to the table. "Up on the table, please", said the young technician.  

Note to self:  Do not wear a turtleneck to treatment.  No matter how cool and James Bond-esque you may look, they will make you take it off and strap you to the table in your tee shirt.  (The tech said that by the end of seven weeks, people are wearing sweat pants with big holes in the knees - whatever is comfortable)

Getting positioned on the table was the hard part.  They clamp down the mask, then take an x-ray to check alignment.  Then they come in and move you the slightest amount, take another x-ray, and repeat the process until you are perfectly lined up with the imaging that is in the computer.  I can only imagine that in a couple years, the computer will track and adjust the patient.

The techs were satisfied with the alignment, and left the room.  The machine started with a couple of clanks, followed by a whirling sound, that resembled the sound of a weed wacker.  With every flash of the blue light, I could see bits of flesh, scalp and hair being ejected through the openings in the mask.  There was blood everywhere.  My decision to where safety googles proved to be a wise choice.  Over the sound of the machine, I could hear the techs in the control room laughing with delight!  "How do I get a job like this?", I wondered.

OK, I made that all up.

Actually, the treatment maybe lasted 15 minutes, was completely painless, and relatively quiet.

I had asked Jennifer, my Nurse Navigator, if I could sit with someone that could talk me through my treatment plan.  I am a "need to know" kinda guy, and not having a clear image in my mind of what is happening is making me a little crazy.  Jennifer arranged that I speak with Sandy, the Medical Dosimetrist.

Sandy's job on the team is to make sure that every single area gets the correct dose of radiation by it's tissue type.  She works very closely with the Radiation Oncologist (Dr. Akthar), and the Physicist, to create the best plan possible.  

Sandy took the time to show me all of the imaging, and point out every tumor that I have.  I'm not going to lie, there is a huge amount of tumor involvement going on in my head.  Some are larger, about the size of a peanut, while others are wire-thin as they lace in and out of the different bones of my skull.  I can see why they are so excited to take on this case.  It will be a miricle - of God, and of modern medicine - if they can pull this off.  The entire team is 100% confident that they can do it.  You gotta love their enthusiasm.

The way it works is; every day, every tumor will be blasted with radioactive protons.  The computer was painstakingly programed by the team, specifically for me.  Some tumors will receive more, and some less, depending on their size and tissue type.  The dosing will also increase over the next seven weeks until the very last day.  

Sandy explained that cancer cells do not have the ability to repair themselves as other cells in our bodies do.  This is why it is important that I receive treatment five days in a row, then have two days to heal.  During those two days, my normal cells will have a chance to repair while the cancer cells die.  I have been warned through this whole process that weeks three, four, and five will be exhausting.  That seems to be the point when my body will be working as hard as it can to heal, and might be running low on energy.  Fatigue is the only real side effect.

As for the machine, there is one Cyclotron in the building that services four treatment labs.  Through a series of magnets, they are able to guide the protons to a specific lab, and to a specific part of the patient.  Sounds pretty cool to me.  I do need to learn more about this machine.

From this point on, there is going to be changes.  No one can predict what these changes will be, since they have never had a patient with this much perineural involvement.  My symptoms could get better, or they could get worse.  we will just have to wait and see.

One treatment down, thirty four more to go.

Sunday morning coming down

"Well, I woke up Sunday morning with no way to hold my head that didn't hurt."  That's the opening verse to Kris Kristofferson's song, "Sunday morning coming down." - one of my favorite, all time, country songs.

Three weeks ago, the issue with my left eye no longer tracking with my right, just crept up out of nowhere.  Dr. Ferris prescribed a steroid - Dexamethasone - hoping to shrink the tumor, or at least slow it's growth.  The eye continued to get worse, so she said to finish off the steroid, and discontinue using it once it is gone.  Thursday, I took the last pill.

I think if you were to see me, you would say that I look the same as I always have.  Maybe a little chubbier in the face from gaining a few pounds, and of course there is the left eye that is cocked in a slightly inside and up direction - no matter which direction the right points.  Other that that, I look like me.  Looking in the mirror, I would even agree.  All things look normal.  It is behind the skin that is the problem.

To me, it feels like the entire left side of my face is blown up like a balloon, ready to pop at any minute.  The cancer is taking up space that it shouldn't be.  It's putting pressure on, and displacing things, as well as effecting the nerves that sense and control certain things.  And, there is inflammation - most noticeable in the muscles of my left face - that I now realize the Dexamethasone was keeping under control. 

I went to bed at 10:00 p.m. last night, and woke up at midnight... with no way to hold my head that didn't hurt.  The worst it has been so far.  Ibuprofen didn't help much, and I never did fall back asleep.  I was relieved to find out that I lost an hour with daylight savings.

You begin to realize just how complex our bodies truly are when parts stop working.

In my case, the muscles of the left side of my face have begun to atrophy.  It has been months since the nerves that control them have shut down, and they are slowly tying themselves into knots.  

There are eight different muscle groups just in our cheeks alone.  There are those that close your mouth and bite down, and others that open your mouth.  There are ones that move your jaw sideways to help grind food, and there are ones that work inside your mouth to push food towards your teeth.  

Right now, without even so much as a conscious thought, your Buccinator muscle (which is the one that controls the inside of your cheek) is precisely holding the inside of your mouth away from your teeth allowing air to flow around your teeth with every breath.  When you take a sip of coffee, they press in to help with swallowing.  And, when you take a bite of that donut, they work to push the food towards the teeth.  

Mine feels like a big old blob that is constantly getting in the way.  All of the muscles on the left side feel that way.  I literally need to stretch my mouth open by grabbing ahold of my lower teeth and pulling down on my jaw before I can eat.  I do that for about a minute to stretch the muscles, otherwise, I can't open my mouth enough to fit a spoon in.

What I'm beginning to realize is that every cancer patient is unique in his or her experience, and the doctors are constantly trying to do whatever it takes to help each individual patient.  There is no "one size fits all" even when it comes to more common cancers like breast or prostate cancers.  We, as patients, need to keep our doctors informed as our bodies react to fight off this intruder.  

One thing is for certain, and that is that this journey of mine is not going to be over when I finish proton therapy in seven weeks.  It won't be over when I do 90 days of chemo when I return home.  I'm sure it will be years of hard work and physical therapy to get back to a new normal.  

A dear friend gave me a quote yesterday, which said, "We don't know what the day holds, but we know Who holds the day."  I trust with all of my heart, soul, and mind, that God is in control of this.  Whether you believe or not, we all get to see what He has in mind for me.

I have a call out to Dr. Ferris' answering service.  Maybe she will give me another round of Dexamethasone.  

Proton therapy starts tomorrow at 7:00am.  

(A), (B), or (C)

I had a conversation the other day.  The premise was that someone who is suffering could not keep a positive attitude throughout the process.  If they did, they would either be proven to be a liar, or a faker.  It came down to two choices: (A) They are not in as much pain as they are leading on, and therefore a liar.  Or, (B) They are in as much pain as they are leading on, and therefore faking their positive attitude.

Although I agree that it would be nearly impossible to keep a positive attitude 100% of the time, I believe the answer is (C) Your attitude is a choice that you get to make every day, and has nothing to do with the pain or suffering in your life.

Every morning we get to wake up and decide how we will approach this new day.  The choice is 100% ours to make.

You can wake up with a smile on your face, and start with a positive, optimistic attitude, or you can choose to adopt a negative, pessimistic attitude.

I can say, for the most part, I wake up happy every day.  I am a morning person.  I like getting up before anyone else in the house, and easing into my day.  And, what is my favorite part of my morning?  Breakfast.  I love to eat breakfast first thing.

I typically get up at about 5:30am every morning.  Occasionally, I will wake up at 4:00am, and lay there wide awake thinking, "I get to have breakfast soon."  The thought of having breakfast begins to overwhelm me.  I really start to get excited about the whole idea.  Then, by 4:30am, I get up and go make breakfast.

What's funny is, I eat the same thing every day.  I came up with a breakfast bowl idea probably four, maybe even five years ago - and I love it.  I might as well tell you what it is.

Start with a one pound roll of Jimmy Dean Hot sausage.  Get it browned up ahead of time, drained and in a container in the frig, ready for breakfast.  Next, a package of Chicken Flavored Ramon Noodles, crushed in the package, poured in a bowl with the season packet, with not so much water to make it soupy, but enough to cook the noodles.  (The directions call for two cups of water, I use about one and a half.)  Pop the bowl in the microwave for three minutes.  While the noodles cook, get out a frying pan and fry up two eggs over-easy.  Remove the noodles from the microwave and throw in a good sized handful of the cooked sausage.  Slide the eggs on top of the noodle/sausage combination and begin cutting them up with a knife and spoon.  Watch as the over-easy yokes blend into the noodles and sausage converting the broth to a creamy, savory, delight.   Your taste buds will be overwhelmed by the multi-level flavor complexities of this 500 calorie culinary masterpiece. (My coronary arteries are clogging as we speak)

Enjoy with a big spoon!  

Now, how could anyone start their day on the wrong foot with a breakfast like that?  I'm telling you, you have got to try it.

I choose a positive, optimistic attitude, in spite of what this life throws at me.  We can all sit here and dwell on all of the problems in our lives.  We can let them drag us down to a point where we let them completely immobilize us.  Or, we can take them as they come, do our best to solve them, and keep moving forward.

With this cancer diagnosis, I could be one to sit here and worry about all of the what-if's.  But, in the end, worrying isn't going to change anything.  Most the time, we worry about things that never even happen.  I have a team of amazing doctors that have rallied around me, and are determined to give me the best care possible.  I can't ask for more than that.  All I can do is trust in the Lord that He will use them to the best of their abilities, and keep moving forward.

I also believe that equally important is that we live with no regrets.  We can all look back on thousands of decisions that we have made in our lives, and some were just plain bad.  But, we made those decisions with the best information that we had on hand in that moment.  It's in the past now.  Look forward, and make the next best decision.

I'm not lying about the pain I'm in, or faking my positive attitude.  I've been saying all along that I have had good days and bad days - days when it is easier to stay positive, and days that aren't so easy.  But, in all of it, I am choosing to look forward to my treatment, my recovery, and everything that goes along with it.  Good or bad.

Thanks again for joining me on this journey.  Treatment starts Monday the 15th!

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.