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.