"Ah ha" moment

I didn't want to go to treatment this morning.  Don't worry, it was just a momentary flash of dread of something I'd rather avoid.  

Let me explain.

The treatments are definitely ramping up.  I can feel the higher radiation dosing in the hour or so after the treatment.  The two points of concentration appear to be the area all around my left eye, and the area under and behind my left ear.  I felt it yesterday, but pushed through it.

The side effects of the treatments are starting to become apparent.  Fatigue is a big part of it.  I had mononucleosis when I was a senior in high school.  That comes pretty close to what I'm feeling today.  We've all been sick with the flu and experienced that lack of energy.  I still have my positive attitude that helps me push through it. 

It's difficult to describe what these two treatment areas feels like.  For lack of a better descriptive term, I would say that it feels like they are cooking.  Heat is definitely being generated in these areas.  Ibuprofen and a blue ice compress give some relief to the inflammation that has the entire left side of my face swollen.

For me, it is just extremely uncomfortable.  For other cancer patients, this is the point where they talk about quitting.  They get to this point of despair where there is nothing good about what they are going through - no light at the end of the tunnel.  There's crazy nerve pain, muscle cramping, soreness in the treatment areas, and not to forget the radiation sunburn we all have.  Our throats and tongues are burned making eating so painful that you just don't want to eat anymore.  Some opt to have a feeding tube inserted.  I'm not to that point yet. 

I still have it better than most.  I don't have the chemo side effects to deal with on top of everything else.  I will remain positive.  I've already had twenty three treatments - only twelve more to go.

I had an "Ah ha" moment experience when I was fourteen years old.  If I didn't come right and say it, you may have picked up by now that I was a career Boy Scout.  From Cub Scouts to Eagle Scout, my teenage years were all about backpacking.  I backpacked over 1800 miles through California, Arizona, Nevada, and Utah.  

We had just finished a fourteen day, 100 mile trek of the Pacific Crest/John Muir trail.  Hiking the John Muir trail again is definitely on my bucket list.  Transportation always seemed a little sketchy.  Old school busses with racks on top where they bungee corded our backpacks, and cramped seating inside.  

On this particular trek, there was another group of boys from San Diego, that were already on the bus.  The ten of us had to find seats wherever we could.  These guys were sprawled out everywhere, and not willing to give up their seats without a fight.  The adults from both groups set the boys straight and we all found seats.  This, of course, opened the door to a constant barrage of cut-downs, insults, ear-flicking, and a whole assortment of childish things that boys do to each other.  Both sides were dishing it out, neither wanting to give the other the upper hand.

After about an hour of our eight hour road trip home, I finally just gave in.  I couldn't keep up that pace.  I just wanted the trip to be over.

That's when I had my "Ah ha" moment.  I looked at my watch and it was twelve o'clock noon.  Then I thought to myself, "By seven o'clock, I will be off of this bus.  By eight o'clock, I will be home.  All of this will be behind me."  

Ever since then, I have lived my life with the future in mind.  When I broke a bone in my hand and had a cast on.  I thought to myself, "Six weeks from now, the cast will be off, and all of this will be behind me."  I've adopted this thought process in every circumstance that I was ever in.

Yes, I have finished twenty three treatments, and I have twelve more to go.  I can handle twelve more.  In two-and-a-half weeks, this will all be behind me.  Then, I get to see what the future holds.

No one wants to go through this.  No one wants to do something that they dread.  But, sometimes we need to do it to get to the other side.  

My faith is strong, and that is what matters the most.  I know that I am not walking alone.

Astrocytoma

I woke up Sunday morning feeling pretty good.  Sleep has been a little hit and miss lately, and I always wake up grateful to find that I slept for six hours straight.  Actually, I had eight hours straight that night, so all the better.  

I made my usual breakfast bowl, and sat down in front of my lap top to eat and check emails.  If it weren't for these travel trivia questions, a couple of Christian sites, and an endless stream of how to perfect my grammar websites, I'd have nothing in my in-bin.  Occasionally, I do actually get a real email from one of my brothers and sisters, or some good friends from Southern Illinois.  That is always a pleasant surprise.

I had determined to go to church this morning.  I admit that I haven't attended regularly since Covid.  There is something good that comes from attending in person that can never be replaced with virtual.  It was a good experience.

Some friends reached out and asked if I would join them at the Kane County Flee Market.  We met at noon and spent a couple hours walking around, looking at things that I had no intention of buying.  If any of you have seen our garage - at any one of our past five houses - you would see how much stuff we manage to move from house to house.  Boxes and boxes that haven't been opened in ten years.  We could have our own flee market!  Or, how about a big garage sale?  Or, a twenty yard dumpster?  Or, a match and a gallon of gas? (Oops, did I just say that out loud?)  One way or another, it can't be moved again.

It was great to get out, to see them again, and to get some fresh air.  By the time I was back at my room, I was exhausted.  The rest of the day was a blur.

Monday morning is the start of week five.

They scheduled me for a 9:50 a.m. treatment, rather than the usual 7:50 a.m. slot I'm used to.  They were doing maintenance on the Cyclotron first thing.  

I had put notes around the room to remind me not to go in at 7:50 a.m.  I am such a creature of habit.  Without the notes, I would have showed up early.  I kept myself busy for a couple of hours, then went to the treatment center.  

The waiting area was packed.  Lot's of new faces that I had never seen before.  

A couple walked in that caught my eye.  He was the patient, and looked like he was well into his treatment, but it was his wife's lime green shirt that grabbed our attention.  I saw the back first, that read, "Brain Tumor Support Group" with the name of their local hospital.  But, it was the front that got everyone talking and laughing.  It read, "You bet your ASStrocytoma, we support brain tumors".  She filled us all in on their journey.  All he could do was smile as she lifted his spirits with every word of encouragement, compassion, and love as she told their story to those who listened.  She is his greatest cheerleader.  The one that will be by his side no matter what.

It was 10:30 a.m. before I was called in.  The therapists were doing their best to make up for lost time.  We walked a little bit faster, got up on the table a little quicker, and nailed the alignment on the second try.  I was finished before you could even play three John Denver songs in a row, which was the soundtrack of the day.  But, not the usual tunes you might think of - the track was a lot of his newer songs that he recorded before his death.  Kathie was always a huge fan, and if it wasn't for that, I'd have never known it was John Denver either.  Does it make me a better person knowing this?  You be the judge, I will wait to hear your comments!

I made it back to my room, and sat down on the couch  This turned into laying on the couch, which turned into pulling the blanket up over me, which turned into the position that I spent the entire day.

Tomorrow is another day.

No more Macho Joe

Today was treatment number twenty of thirty five, and the end of week four.  Fridays are team meeting days, where I meet with the nurses, nutritionist, and doctors.

It's great that they take the time to meet and stay one on one with their patients.  In today's pandemic suppressed world, they could so easily do it over the phone or zoom.  Yet, they make it a point to be there in person.

Kari was my nurse this morning, who takes my vitals, and of course, my all important weight.  I am down a pound from last week.  I need to remember to drink a bunch of water before next Friday's meeting.  

Kari went over all of the medications that I am taking, making sure that I am as comfortable as I can be.  I want to get off the steroid, so we are on a plan to ween off of it over the next two weeks.  

They have been talking about my skin being burned by the radiation since the beginning.  If I can possibly learn a lesson from all of this, it needs to be less cynical when they warn me of pending issues.  They were saying that it will be like a sunburn, and that I should be applying lotion everyday to keep ahead of it.  Did I listen?  Of course not.

Oh, it's like a sunburn, all right.  The kind where you passed out drunk in the Bahamas, on a spring break weekend, and your friends leave you there for six hours.  My skin is destroyed.  I barely need to touch it and I get another spot that starts bleeding.  At this point, all I can do is try to gently apply a medicated lotion, and try no to touch it.

I finally had to throw up the white flag and surrender.  I ignored the warnings of fatigue, I ignored the warnings of the skin, is there anything else that I need to be worried about in the next three weeks?  Cassie left the question for Dr. Akthar to answer.

Janine, the nutritionist, came in next.  She wasn't concerned about my one pound weight loss, but wanted to know how I was eating.  I have found that anything that I can roll up in a flour tortilla is the perfect food for me.  She understands that I can't open my mouth wide enough to put a spoon full of food in, and that the tortilla delivery system works well for me.  She suggested that I broaden my pallet and try chicken salad, and tuna salad in the tortilla.  That all sounds good to me.  She is all about me getting as much protein as possible, to keep my strength up.  I made a pot of ham and bean soup that I puréed into a smooth consistency, that I am able to drink from a cup.  I got two thumbs up for that.  I think I have the eating department covered.

Dr. Akthar came in next to talk about how the plan is going.  I asked him what they use as a benchmark of progress, since MRI imaging doesn't seem to play into it.  He said they use the daily treatment alignment overlays.  Everyday, he reviews the alignment.  This goes back to Ashley and the other therapists that have that all important task of getting me in the exact position on the table before treatment.  He zipped through all twenty overlays, and each one was perfect.  He said that if the alignment is perfect, the plan is perfect.  Can't ask for more than that.    

I asked him about the question that I left hanging with Cassie.  All Dr. Akthar could say is that the treatments gain intensity as they near the end, so including the irritation to my tongue and throat, all of these symptoms will likely get worse.  He said that if at anytime I feel the symptoms are becoming unmanageable, I need to call the nurse's station and get ahead of it.  "Macho Joe" has quickly turned into "I-need-to-do-whatever-they-tell-me-to Joe", and start doing it.

I asked about how the plan goes from here.  I have fifteen more treatments, then they cut me loose, and I go home.  The protons will be doing their work for about another thirty days after the last treatment.  At that time, I will come back to the Proton Center and have another set of high resolution MRI images.  If the plan was executed perfectly, there should be no more cancer.  Understandably, that's a lot to hope for, but that is the plan.  That's something to pray for.

From the beginning, there has always been this awkward relationship between Radiation Oncology, and Medical Oncology.  Medical handles chemotherapy.  Most times, they work together giving the patient both treatments simultaneously, but in my case, they decided to leave Medical out of the plan.  Squamous Cell Carcinoma can most effectively be killed with radiation, and doesn't respond well to chemo alone.  From the beginning, chemo was to be used to enhance the effects of the radiation.  Now that we have nearly gone full circle on this, the hanging question is if I need chemo at all?  

At a minimum, it will have to wait until after the thirty days, and the new MRI.  At that point, I will leave it up to my Medical Oncology team at Marshfiled in Minocqua to make that call.  Dr. Yasar and her staff are top notch, and I'm confident that they will do what is best for me.

So, that's another crazy week down, with three more to go.  The weather here has been rainy off and on.  I have a couple of projects to finish.  I better get after it, my time here is running out. 

Hump Day!

Today marks the halfway point of my treatment here at Northwestern.  It was treatment number 18 of 35.  If that is not something to be optimistic about, I don't know what is.  Everything is going right on schedule, and according to plan.

Since I have been on the 7:50 a.m. schedule, Ashley has been my Radiation Therapist.  She is always assisted by one or more other therapists.  Bridget, Jarod, and the other Ashley, to name a few.  I may have referred to her in past blogs as a tech.  That is my mistake, since these young people have gone through extensive training, and are responsible for the physical portion of the treatment.  Sure the Doctors and Physicists have their work cut out for them, and I am very thankful for all of the time that they spent sifting through layer after layer of MRI imaging to create the plan.  Then, the therapist take it from there.

Every morning, I walk in to treatment room #4.  I remove my badge, which one of the therapist scan, and climb up on the table.  They always ask if I would like a warm blanket, which I always turn down.  (Just between you and me, I'm waiting for them to not ask me if I want a blanket, at which point, I will ask for one.  Gotta keep them on their toes.)  Then the process begins.

The mask is stretched tight over my face and clamped into position.  I need to get a good look at this clamping apparatus.  It's not a quick - "snap, snap".  It is more of a "snap", "I need you to slide down towards your feet", "snap", "Now towards your head", "snap". "OK", "snap, snap, snap".  Then, I try to move around in the mask to make sure it is all locked in.  

My "ready position" is when I push up towards my head, so that the mask is tight on my forehead, tip my chin down slightly towards my chest, and relax my jaw so my mouth is slightly open.  (Remember, I fell asleep during my original CT Sim, so I will forever be haunted with the words, "Keep your mouth open.")  I shift my upper torso slightly to the left which aligns a tattoo dot on my chest with a laser.  Next is X-rays.

This is the physical part of the treatment.  These therapist are tasked with making sure that I am in perfect alignment with the computer plan that the doctors put together.  They take X-rays of my position on the table and overlay them with the plan.  Even the slightest mis-alignment needs to be adjusted.  The plan calls for a 1mm window of tolerance.  They come in and adjust me on the table, then another X-ray.  Sometimes, it takes three or four tries.  And, sometimes, it just doesn't feel right, so I have to signal for them to start over.  

Once we are in alignment, it's game on.  The gantry is set to position #1, and the nozzle is set to it's position #1.  The familiar "ding" tells me to hold that position.  We are ready to start.

The blue flashing light means that the protons are being released.  It sounds like a lightsaber from Star Wars.  I can see it through the corner of my eye as it swooshes from side to side.  The target area under my eye is a short, straight swoosh, about an inch long.  On the side of my head, it takes several long, curved arcs that cover the side of my face from the forehead to my ear.  I lose sight of it at that point, but trust that it is going exactly where it needs to be.  

The magnetic lock on the door releases as the therapist enter the room to set up for position #2.  I am not allowed to talk, since it could change my alignment on the table.  I lay there quietly, listening to whatever tune might be playing over the speakers.  This morning was Bruce Springsteen's "Born to run".  I like that song.  Brings me back to my high school days when fast cars were what I was all about, and the girlfriend whose heart I broke because of them.

One more "ding" and we are ready to start position #2.  It is low and to my left.  About the seven o'clock position, so I can't really see it.  Position #2 take about half of the time as position #1.  

The whole treatment takes about twenty minutes all together.  I am probably one of a couple dozen patients that shuffle through there everyday.  And, I'm just talking treatment #4.  Yet, Ashley and the other therapists take the time to get to know us.  We're not just numbers, but people that need help, encouragement, and understanding.  

If I were young again, it would be something that I would be really interested in getting involved in.  It doesn't have to be a proton center, every major hospital has an Oncology Department.  At 59 years of age, is it too late?  Maybe I will look into it.  Then again, let's leave this with the young people.  

Smoothy Badge

A couple of posts back, I mentioned that I was losing my hair on the left temple, and above my left ear.  They warned me in the beginning that the proton therapy has a tendency to create bald spots where the protons enter through the skin.  Hair loss is the least of my concerns.  

This morning I had to laugh.  After getting ready to start my day, I noticed that half of my goatee was missing.  After further examination, I noticed that most of my left eyebrow was also missing.  It is funny to see.  We look at ourselves in the mirror, and expect a certain image reflected back.  When we don't see it, we stop for a second and try to make sense of it.  I stood there for a minute or two trying to decide what the right course of action should be.  I could simply go on with half the manscaping that I am used to, or just shave it off.

Covid-19 has launched us into a new normal of wearing masks when out in public.  They can't see my face anyway.  Who really cares if I have half a goatee?  Family genetics have come up short when it comes to facial hair.  I managed to grow a descent goatee, but it really lacks any sort of substance.  

Growing up in Poway, CA was an amazing experience.  I don't say that lightly.  I grew up in the best time possible for our little town. 

In October of every year, the Pow Wow Days annual celebration would start.  The Pow Wow Posse would begin their annual charity drive that basically came down to; Could you grow enough facial hair to look like a man, or would you buy a "Smoothy Badge" from one of the Posse members?  If you were caught without facial hair or a Smoothy Badge, you would be arrested, and but in jail for an hour.  It was a lot of fun in our small town.  Wives would rat out their husbands, neighbor's would blow the whistle on neighbors.  It was good clean fun.  

My dad would grow a goatee every year.  Spars as it may be, it still qualified him to stay out of jail.  Being one of the founding members of the Poway Volunteer Fire Department added an extra level of protection.  That is, unless my mom wanted to see him behind bars.  

The annual celebration would culminate in the PRCS rodeo at the fair grounds.  In the day, it was the last stop before these cowboys would go to the finals.  It was huge, and it meant a lot.  I worry that we have lost that feeling. 

My best friend "Bobby" and I would create adventures up in the hills that surrounded our town.  We would set out on any summer morning, with a whisper in my mother's ear, "Me and Bobby are going up in the hills to catch rattlesnakes."  My mom's reply?  "Be careful, and be home for lunch."  There were no cell phones, no way to communicate, just trust that they gave their children the wherewithal to make good decisions, and to be safe.  They let us explore, and be kids.  We came home battered and bruised, but we learned.  

Would a kid today know what to do if they came across a rattlesnake in their path?  Rattlesnakes are still out there.  What would they do?  

We live in a world where parents think that if they put a Styrofoam helmet on their kids head, and send them out on a bicycle, they will be safe.  Are they?  I suppose if you keep them confined to a world that is safe, with no adventure, and no exploring, they could survive.  But, how much are they missing?  Would it be better if we let them crash on their bike, getting a skinned knee or two?  Maybe they might learn to protect themselves in the event of a crash.

One of my friends, Gary, was a bit of - how should I say - a risk taker.  He was the guy that would push to envelope to it's max.  When Bobby and I were trying to figure out the safest way to catch a rattlesnake, Gary was the guy that would jump right in, grab the rattle snake by it's tail, and hold it at arms length, hopefully keeping it from biting him.  But, he was bit.  It was reckless.  We learned from his mistakes.  

Parents today would say, "How could you ever allow your kid to be put in a dangerous situation?  I believe that if you teach your child to be safe, and understand what the consequences are to their decisions, they will learn... and grow.  And, be better adults for it.

I went ahead and shaved off the rest of my mustache/goatee today.

Then, I immediately decided to grow it back as soon as possible.  It's never too late to learn from our mistakes.

Does anyone have a Smoothy Badge?  

Fatigue

Friday morning was treatment as usual, then off to the team meetings.  The usual meeting room was being used, so they showed me to a pediatrics exam room to meet with the nurses.

The walls of the exam room are covered with little painted hand prints of former patients.  Each had a name and a date next to it.  Some had sayings, poems, and lyrics that had to have been important to the child while they went through treatment.

It is a little overwhelming to see just how many there are.  There has to be well over one hundred, each being a child that bravely faced what might just be the hardest thing they will ever face in their lives.  I asked, and there are two other rooms.

Two of them caught my eye.  First was Zoe - 12/10/2010.  The Proton Center opened in 2010, which means that Zoe could have been their very first Peds patient.  I think about where she might be today.  If she were 10 years old at the time of treatment, she could be a 21 year old woman right now.  Maybe a senior in college, or a young adult finding her way in the world we live in.

The second one to catch my eye was Lukas - 04/01/2021.  Lukas was the young man that I met the other morning when we shared our stories with each other.  Lukas lives in Indiana, on what sounds like a small farm, with chickens and goats and plenty of room to run and explore.

They each have their whole life ahead of them.  They survived cancer.  

The nurse came in to check my weight and vitals.  Vitals are good, but I lost three pounds.  I'm going to hear about that from Janine, the nutritionist.

The nurse asked about the usual symptoms, and I was anxious to report of the horrible sore throat.  She made notes for the doctor and soon left the room, saying the doctor would be in shortly.  "Which doctor this week?", I wondered.

I was pleasantly surprised to see Dr. Akthar come through the door.  Dr. Akthar is my primary, but scheduling issues have kept us from meeting face to face for the last two weeks.  

If I were to meet Dr. Akthar on the street, I would guess his age at about 28 years old.  Something tells me that he is a bit older, but I can't imagine by much.  He is a brilliant young man that obviously has the credentials to be on staff at one of the top ten Proton Centers in the world.

He had never reviewed the treatment plan with me, and began by opening the many imaging files.  I can tell how much he enjoys his works, and I am all for learning more about the process.  He had the High Resolution MRI's from February 23rd, which showed the tumors in detail, and the treatment plan that they put together using the first CT Simulation.

The treatment plan is a three axial view of the workings inside my head.  It looks like a thermo-image that you would see on a spy movie, with red being the highest dose, through blue, being the lowest dose.  He explained how much detail went into putting together my plan.

He showed me the tumor under my left eye, then overlaid it with the treatment plan.  The top of the tumor is 5mm from the bottom of my eye.  They are able to radiation dose that tumor within a 1mm window, with no radiation coming within 4mm of my eye.  The plan changes the dosing and placement in a very specific order to get the desired response.  I am absolutely fascinated by the technology of this process.  

We went through every area of treatment, showing which areas are treated with the nozzle in position one, and which in position two.  There are areas where the tumors have spread that receive lower, broader dosing, while others receive the higher more targeted doses.

Their job is to save our lives.  To eradicate this cancer from our bodies and give us the best chance to live a normal healthy life.  I suppose on one level, they can't focus on a particular patient and their story, but on the other hand, how can they help but become invested in their success?  So much time is spent in the planning for each individual patient.  I'm not sure that I could separate the two.  It must be an emotional roller coaster, or they are stronger than I am.

Dr. Akthar asked about my left ear.  Am I having pain or loss of hearing?   I could tell he was fishing for answers that he already knew.  Again, I told him to be straight with me and tell me what's going on.  The tumor on the seventh cranial nerve has followed the track up my auditory canal, and through the left middle ear.  The bottom line is that if the cancer doesn't destroy my left ear, the radiation will.  If that is the worst I have to endure, I still have it pretty easy.  Truth is, my Dad has had hearing loss over the past few decades.  My girls remember fondly, asking Grampa questions that he obviously didn't hear, but gave a generic answer.  I will be that Grampa to Quinn and Joe.  They will love me as much as my girls love their Grampa.

Now that I have three weeks of treatment under my belt, things should start changing.  Dr. Akthar explained that the radiation is a cumulative effect, with about a four week delay.  From this point on, I should be sensing changes that would signal shrinking tumors.  He is particularly interested in my left eye movement.  It was the last symptom to develop, and has been one of his primary targets in treatment.  He really wants to see it corrected.

Each treatment increases in intensity by design, with the very last treatment being the highest.  I will be radioactive for about four weeks after the final treatment.  After the four weeks, they will take another high resolution MRI and look for any signs of cancer.  We'll be praying for no cancer.  

I next met with Janine, my nutritionist.  She is very worried that I lost three pounds.  Noting my last blog, I don't really get all worked up about a pound or two.  She, on the other hand, sees that as a big step in the wrong direction.  We talked about the problems that I have been having eating, and specifically, swallowing.  There are plenty of products on the market that will help in times like these.  Drinks that are high in carbs, that also give the necessary nutrients that a body needs, and others that focus on getting the necessary protein to give us the strength to make it through the treatments.  She loaded me up with a bunch of free samples, and a program to make sure that I get the necessary balance in my system.

Janine takes this very seriously, so I need to do the same.

After the team meetings I decided to head home, to Minocqua, to spend the Easter weekend with Kathie, Jamie, Quinn & Joe.  It was a long six hour drive, but worth every minute to see them when I arrived.  We went to the local Easter Egg hunt, met with the Easter Bunny himself (Quinn was so thrilled!), filled plastic eggs, and colored a bunch of hard boiled eggs.  Easter morning, Jamie and I spread eggs all over the back yard with special gifts for the two kids.  It was so much fun to see that child magic in their eyes.  

I had to say goodbye, knowing that it would be a month before I will see them all again.  The drive back to Warrenville was tough.  I had to stop and take a nap for an hour at the half-way point.  It is catching up to me.  The fatigue that they warned me about is real.  I'm going to have to pay attention and not push myself too hard. 

I'm writing this post Monday morning, and to tell you the truth, I'm exhausted.  I'm taking a rest day.  We'll talk soon.

Do you want some cheese with that whine?

I know that I've mentioned in past posts that the nurses are always looking for typical ailments that appear to happen in proton radiation treatments.  Sore throat is at the top of the list, followed by hair loss in the treatment area, dry skin, sunburn like feeling, etc.  Up until now, I've been able to answer "no" to all of those.

This morning, I was looking in the mirror and noticed that the temple area just in front of, and up from my left ear has no hair.  I had to laugh because it looks like someone had done it as a prank.  You know, those college days pranks when you pass out drunk and wake up with half of your head shaved and permanent marker all over your face.  I wouldn't know.  I never went away to college or did the frat boy thing, but if I had, I would have been the one with the razor and Magic Marker.

Then there is the sore throat.  

Protons emit radiation.  That's their job, and why I am going through this.  It is much less potent than Gamma ray, and much more targeted, but certain collateral damage is to be expected.  The tissue in your throat is very sensitive, and mine is burned.  One of the tumors was close enough that the radiation bled over and irritated the tissue.  To make matters worse, there is a matching spot on the very back of my tongue that is also burned.  The combination of the two has made it hard to swallow.

I've been dealing with the loss of chewing muscles on the left side for months.  I could chew on the right side with little or no problem, but the left are completely useless.  Chewing crunchy things like nuts or crackers started to become painful recently, so I shifted to softer foods.  

The real problem started a few weeks ago when those chewing muscles started to rebel and cramp up.  I think we all have had a leg cramp at some point in our lives, so imagine having a cramp in your face.  There's nothing you can do.  With the help of steroids, we have kept the muscles from cramping, but now they are in a clenched position, that makes it look like I'm growling with my left side and smiling with my right.  What this all comes down to is that I can barely open my mouth enough to put a spoon in.

I thought I hit the grand slam when I discovered that anything wrapped in a flour tortilla was the perfect solution to all of my eating problems.  It was going good over the past couple of weeks.  I was rolling some pretty tasty things like, Sardines with Louisiana Hot Sauce, chicken fingers with Hidden Valley Ranch Dressing, beans and rice with Heinz Bold and Spicy Barbeque Sauce.  You can get pretty creative when you have to.  Janine, my Nutritionist, is always preaching 25grams of protein per meal, with complex carbs, and plant based vitamins and nutrients.  Throw some raw spinach in with the wrap and I'm good to go.

Now, things have changed.  Eating has become nothing less than torture.  If I can actually open my mouth wide enough to get it in, it is painful to chew, and even more so to swallow.  It looks like for the time being, soup and smoothies are going to be on the menu.  The next step will be anything that I can get past my lips by way of a straw.  

I don't mean to use this as a platform to whine about my struggles, and generate sympathy.  Compared to the man in treatment #4, my struggles seem insignificant.  But, they are real, and each of us has to figure out a way to navigate through them.  

The other morning when we were delayed and began sharing our stories with other patients, a woman next to me said, "Thank you for sharing your story.  I've had cancer four times now, and none of them were anywhere near as bad as you have it.  Yours is a powerful story."  From my perspective, I don't feel I have it all that bad, but from hers, mine is worse. 

I wouldn't wish this on anyone, but at the same time, I can't help but seeing this as, as much of a blessing as a curse.  It changes everything.  The way we look at life, and love, and our fellow man.

I'm sure that even in that same room of patients, there are those who would disagree.  Those that would refuse to see any blessing, seeing only the curse.  I suppose this goes back to how we choose to start our days.  Everyday, we are given a choice.  Maybe the secret is in making the choice everyday, so that when a tragedy comes along, you're already prepared for it.

I had my second CT Simulation today.  After treatment tomorrow morning, I will meet with the doctors and nurses to review my progress through week three.  Hopefully, we will be seeing shrinking tumors, and healing tissue.

If I don't talk to you before then, have a beautiful and blessed Easter.

  

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.