Two to go

It's Friday morning with two more treatments to go.  To tell you the truth, I am physically wiped out.  Trying my best to eat as much as I can.

I found that one thing that goes down pretty easily is rotisserie chicken.  Most would be agassed at seeing me eat it, since it is the bone meat that I like the best.  It's soft enough and slimy enough that it goes down with no effort.

I start by removing the two breast pieces and putting them in a ziplock bag, then I proceed to eat everything else.  With my fingers I tear every scrap of meat from the entire carcass until there is nothing left put a pile of bones.  Much like a scene from a medieval banquet.

Anything soft and smooth is the way to go.  Protein drinks and smoothies are OK, they just taste bad.  This morning, I made some softly scrambled eggs with very finely chopped ham and cheese.  That was pretty good.  I feel like I have the protein side of it covered.  I should see about taking a multi-vitamin, for the next few weeks until I can get my diet under control.

This last round of treatments changed things a bit.  My sinuses are perpetually clogged, so I can no longer breath through my nose.  Add to that the mucositis that stops the normal flow of mucos which results in dry mouth.  Now, when I wake up, the roof of my mouth feels like an old dried up river bed.  My sister, Mary, sent me some Aloe Vera juice which is really good, goes down easy, but I was hoping it would have some lasting effect of moisturizing the inside of my mouth.  It's very soothing while I sip on it.

I've tried a tablespoon of Olive Oil, swish it around in my mouth and swallow it.  That seems to work for about 30 minutes.  But, I'm thinking that if I swallowed a tablespoon of Olive Oil every 30 minutes, I'd being having other problems as well.  

The bottom line is that all of these symptoms will begin to clear themselves up in the next two weeks after treatment.  I just have to gut it out a little while longer.  At least I'll be home.

I can't wait to go into Rustic Pines Pub for a pizza, or maybe their Friday Fish Fry.  I might even stay for a beer.

Mucositis

"Mucositis".  Who would have ever thought that it would be something to talk about?  Understandably, for you, I hope it never is.  But, for cancer patients, it is something very real.  To quote the Oral Cancer Foundation:

"Mucositis occurs when cancer treatments break down the rapidly divided epithelial cells lining the gastro-intestinal tract, leaving the mucosal tissue open to ulceration and infection.  Mucosal tissue, also known as mucosa or the mucous membrane, lines all body passages that communicate with the air, such as the respiratory and alimentary tracts, and have cells and associated glands that secrete mucus. The part of this lining that covers the mouth, called the oral mucosa, is one of the most sensitive parts of the body and is particularly vulnerable to chemotherapy and radiation. The oral cavity is the most common location for mucositis.

Oral mucositis is probably the most common, debilitating complication of cancer treatments, particularly chemotherapy and radiation. It can lead to several problems, including pain, nutritional problems as a result of inability to eat, and increased risk of infection due to open sores in the mucosa".

I've said several times in my blog that all I want is the truth.  "Shoot straight with me, don't sugar coat it."  

I understand that I am not like most patients here.  Most don't want to talk about it.  They choose to rest in the peace of knowing that the doctors have it under control, and they will be OK in the end.  I understand their feelings - cancer is a very scary thing.  Sometimes, scary things are best to be avoided.  Like a grizzly bear.  Let them go away - don't confront them.  For those patients, that might be the best approach.

My problem is not picking up on the subtle innuendos that are all so important.  "You will have a sore throat, most likely, but we have treatments to help with that."  

I wish they would have come right out and said, "Mucositis is the most common side effect to radiation therapy.  You will have painful sores in your mouth that will keep you from wanting to eat.  If you keep on top of it, we can minimize the pain."

For some patients, that would be a very scary thing to hear.  Maybe scary enough to make them want to forego therapy altogether.  

The doctors and nurses here at Northwestern see hundreds of patients.  I'm sure from experience, they have the introduction speech dialed in to be just right for every patient to hear.  If anyone ever reads this blog, and unfortunately ends up with cancer, all I can say is that if you are a "need to know" kind of person like me, ask questions.

I heard every word they said in the intro speech.  I just didn't pick up on how important it would be.

"You will have a burn in the area of treatment, make sure that you put lotion on it." "There will be some hair loss in the area of treatment."  "You will have a sore throat, but we can minimize the pain, if you keep on top of it."   

I should have asked how bad the burn would be, and how bad of a sore throat we are talking about.  Instead, I thought to myself, "Sun burn, sore throat?  This is easy stuff.  I'm not going to worry about it."

I've ruined two pillow cases, from blood stains, from the burns on the side of my face.  Every time I turn my head, the skin pulls and starts bleeding.  I'm probably going to have to pay for them.  

My point is that I didn't ask the right questions.  

I am hoping that, in this last week, I can impart some of the wisdom that I have learned onto someone that is just starting out.  Maybe help them be more aware of what is to come, and help them stay on top of it, to minimize their pain.

My message would be to take seriously what they say is ahead of you.  I blew it off, like most guys would.  Macho Joe does not do well in radiation therapy.  There will be pain and discomfort, and being prepared is the best medicine.  It doesn't make you a weaker man, just a better prepared man.  "Be prepared" is the Boy Scout motto.

I have five treatments to go, starting Tuesday.  The last will be Saturday, May 1st.  I can't wait for this to be behind me.

 

"It was the best of times, and it was the worst of times."

 "It was the best of times, and it was the worst of times." to quote Charles Dickens from his novel, "A tale of two cities".

This week, week six, has been the most challenging of the entire process.  I'm not going to lie, it has turned a corner into a level of pain that I was not prepared for.  The burning of the skin has turned into huge open sores that look like something from a horror movie.  I Googled burns and found that there is a big difference between heat burns, sun burns, chemical burns, and radiation burns.  Radiation burns destroy the skin.  There is no repairing that skin, it needs to be deburred to allow new skin to grow, otherwise, it tightens up and constricts the blood flow to that area.  It has been a rough few days.

The targeted areas are my left ear, left eye, and the base of skull tumor.  The radiation dosing has increased in these areas, and to put it bluntly, they really hurt like hell.  I'm sorry to unload on everyone, but if I can't be honest, I wouldn't be telling a true story.

This is the worst of times.

As for the best of times, my brother Jim drove from Poway, CA to Warrenville, IL to offer any support he could.  We don't get to see each other very often, and to have my big brother do something like this just humbles me.  I would have much rather he come up to Minocqua when I am at 100%, so that we could spend some time fishing, or hunting.

He has seen me in the worst of times.  I could have just as easily done this on my own, but having Jim here has put this into a new perspective.  He has been cooking things that we both can eat.  I probably would have just heated up a can of Campbell's Chicken Noodle Soup.

I might have written a blog that watered down what is going on.  I suppose being in charge of writing gives me control of the narrative - the story that I want to tell.  Having an accountability partner means that I have to tell the story as it is.

I don't want any one to worry for me.  I will be OK.  There will be months of treatment ahead, and months of therapy to get my nerves to do what they are supposed to do.  But I will be OK.

As of right now, my tongue and the roof of my mouth have huge radiation burn areas that make it uncomfortable to eat anything.  I want to eat, but it just hurts so bad that I can't swallow.  I have a Lidocaine solution that I can put in my mouth that numbs these areas for about five minutes.  If I eat fast, I can get some food down.  My weight is staying steady at 185 lbs.  Jennine, my dietitian, calls me several times a week to make sure that I am on track - eating enough to keep my immune system strong.  I'm trying, but it is tough.

When Kim, my nurse, gave me the orientation talk six weeks ago, she went over what was ahead of me.  She talked about the burns, and how to stay ahead of it.  She told me that I would get a sore throat, and that I would have trouble eating.  I heard everything she said, but blew it off thinking, "She says that to everyone, It won't happen to me."

I'd like to give the orientation talk, right now.  That way I can show them the burns on my head and neck.  Have them look in my mouth, with a flash light, at the sores that keep you from eating.  But, then again, I might scare them away from treatment.

Sometimes it's crazy to think that just six weeks ago, I was the newbee.  Now I am a veteran - one of the long timers.  

Thirty treatments are behind me with five more to go.  They have a planned maintenance scheduled on the cyclotron, so I get a four day weekend.  Next treatment is not until Tuesday.  My last treatment will be on Saturday May 1st.

Jim is going to stay around as long as I need.  I hope that this four days off will help heal my throat, and make me a little more comfortable.

Five more treatments to go.  I'm ready to cross the finish line.  I'm ready to go home.

Week six

Dr. Akthar mentioned that week six and seven will look a lot different than the previous five weeks.  Now, we enter into phase two of the treatments.  As far as I'm concerned, phase one had wore out it's welcome, anything different would be a welcome change.

Last night - Saturday night - was the worst so far.  So much pain, inflammation, and swelling that I just couldn't get ahead of.  Nerves are coming back to life, which is a good sign, but not all at once.  The cold compress on the side of my head seems to be the most effective, and by 9:00 p.m., things were starting to calm down.  By 10:00 p.m., I was able to take my final meds for the day, and get to bed.

The burn is the worst.  When I was a young apprentice mechanic at the Caterpillar Tractor Dealer in San Diego, I burned my leg with a steam cleaner.  I had no idea that you could suffer a third degree burn from steam - I suppose I always thought that had to come from a flame.  I was filling the big mop bucket with boiling hot soapy water when the wand got away from me and blasted the side of my calf on my right leg, right through my pants.  It hurt, but I didn't think much of it until we were dressing out of our uniforms and into street clothes.  One of the guys said, "What did you do to your leg?"  By this time, from my ankle to my knee was bright red (first degree burn), an area about four inches in diameter was badly blistered (second degree burn), and an area about the size of a silver dollar, the flesh was gone completely (third degree burn).  For the first three weeks I had to go to the burn unit everyday.  It took months and months to heal.  What I'm dealing with now is nothing compared to that, but burns are the worst.

Week six brought a whole new schedule, and a whole new team of therapists.  For some reason, I had my first treatment today - Sunday - at 2:55 p.m.  I just got back from there.  

My new therapists are Jacob and Jamie.  They gave me a quick briefing before I climbed up on the table.  These last ten treatments are very targeted to just a couple of specific areas.  Not that the alignments were any less important before, they are of absolute importance now.  Jacob explained that there will be several X-rays taken to ensure no margin for error.  

With the mask securely clamped to the table, and me in my ready position, they put the nozzle in position #1 and took the first X-ray.  This changes the angle of the X-ray to be perpendicular to nozzle.  One more X-ray, and Jamie came in to fit the position #1 head on the nozzle.  With everything ready to go, Jacob took one more X-ray, and said, "Hold that position."  

It's a little intimidating.  The mask fits pretty tight, but I can still move 2 or 3mm in any direction.  I concentrated on a single spot that I could see through the webbing of the mask.  Position #1 treatment only took about one minute - the second, and half of the third verse of Lynyrd Skynyrd "Sweet Home Alabama".  It took longer to set up position #1.  Just in case you're keeping track, I laid on the table at the beginning of Led Zeppelin "Kashmir" - my favorite Zeppelin tune (8:32), along with the first verse of Sweet Home Alabama (1:30?)

I could hear the magnet lock on the door release.  Jamie entered the room to repositioned the nozzle, and with a lot of clunking and banging, change the head on the nozzle for position #2.  Jacob took another X-ray.  "Hold that position." He said.

Position #2 took a little bit longer than position #1, but since I don't consider Rod Stewart "Maggie May" as classic rock, I didn't bother to give it a time stamp.

My last two weeks of treatments start on the early evening shift at 5:50 p.m., rather than the 7:50 a.m. shift that I had grown used to.  That will be a bit of a change.  I'm usually winding down by then.

I'm on the home stretch.  The end is in sight.  

Phase Two

Today is Friday, and the end of week five.  Twenty five treatments down, with ten left to go.  

I don't want to sugar coat this any more than I've wanted the doctors to, through this process.  It's tough.  We can't ask our bodies to be OK with launching trillions of radioactive protons into us, any more than we can ask it to be OK with a splinter in our finger.  We each have an amazing immune system that constantly watches for unwanted invaders.  When it senses something that shouldn't be there, it goes into all out attack mode to get rid of it.

Most of the time, it does an amazing job of fighting off what ails us.  Other times, some are not so lucky.  The immune system is not strong enough to do the job.

At first, it seemed a little silly, the attention that each team member paid to me.  The nurses knew the effects and the questions to ask.  The doctors were keenly aware of the side effects of each individual patient's treatment plan.  They designed it in a specific way, knowing that the way justified the means.  For me, there would be burns on my tongue and throat.  There was no other way to get the treatment where it needed to be.  They planned for it, and they planned for me to deal with it.

I've teased Janine, my nutritionist about being so strong when it comes to my food intake, and about keeping my weight steady during this process.  She probably has the most important job of all.  Her entire focus is on keeping my immune system strong so that I can handle what the treatment plan throws at me.  I gotta tell you, if it wasn't for her and her constant reinforcement of at least 25 grams of protein three times a day (the more the merrier), with complex carbs, and vegetables for vitamins, I could be in worse shape.  I meet with her every Friday, and she still calls me two other times during the week, to make sure that I am on the right track - that I'm not slipping - that I am doing what I need to do.

It's crazy to think that, with all of the patients that shuffle through this place, they pay so much attention to each one of us.  It is an absolute blessing that, all things considered, I was able to come here.

I met with Dr. Akthar this morning.  We have this common technologically geeky relationship, when it comes to looking at scans, and treatment plans, in vivid color.  He didn't hesitate to pull up the computer plan and show me what is next.

As it turns out, the first five weeks were more of a broader spread, focused on targeting the two main tumors - below my left eye and behind my left ear.  The intent was to stop any spread that may still be going on since the last MRI.  The next two weeks are targeted at very specific tumors along my nerve roots.  There is still the one under my left eye that is effecting the infraorbital nerve, but this focus will be on the tumor that is tracking along my Maxillary nerve - which is classified as a "base of skull tumor".  This is the one that started the whole process of me coming to Chicago Proton Center in the first place.

It is only separated from the bottom edge of my brain, by some very thin tissue, and about 1/8 of an inch of bone - the base of the skull.  Gamma ray radiation, that is used in most cancer treatment centers, has a predictable collateral damage path.  When used for most cancers, the damage is to soft tissue and bone, that will repair themselves in a matter of weeks.  Using Gamma ray on this particular tumor would have resulted in damaging this portion of my brain, most likely resulting in seizures, and other neurological deficits.  

Dr. Akthar is very excited to move to this next faze. There is a lot going on.  There is the infraorbital nerve, and maxillary nerve, but there is also the sixth cranial nerve that is causing my left eye to go crossed.  There is the seventh cranial nerve that has the left side of my face paralyzed, along with half of my tongue.  All of these areas are targeted in the next ten treatments.  

One of the bright spots is that, with the more targeted areas of treatment, my tongue and throat should have a chance to heal!  That would be awesome.  Being able to eat without pain would be great.  Even if it tastes like wet cardboard.  I'm feeling Chick-Fil-A!

This is the toughest thing that I have ever done in my life.  At some point, when the cancer is gone, and the radiation has stopped, and perhaps, the chemotherapy is over, my immune system will be able to take charge and get me back to what I will call normal.  What that will be, is yet to be known.  

Until then, I will wake up every morning with a smile on my face, looking forward to what's next.  Have a great weekend. 

"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.