This is great news!

Tuesday was my post-treatment MRI and check up with Dr. Akthar at the Northwestern Chicago Proton Center.

Kathie and I left Minocqua at 9:00 a.m. Monday morning for our six hour drive south.  We planned on getting a hotel room since my first appointment was at 7:30 a.m. Tuesday morning.

You may remember me talking about the February MRI's that seriously put my fortitude to the test.  They separate the head portion from the neck portion for no other reason than the amount of time that each takes.  The neck typically takes about an hour and ten minutes, while the head takes about an hour and forty-five minutes.  In February, they did the neck on Monday afternoon, and the head Tuesday morning.

This time, we didn't have that luxury.  We would have to do the two back to back.

Making sure that I didn't drink a bunch of fluids before hand, and of course using the bathroom before the test, ensured that I wouldn't have a repeat of the agony of February's MRI.

I was on the table by 8:00 a.m. - ear plugs in place, and head secured - the machine started right away.

The young woman that was running the MRI would come over the loud speaker at each segment and tell me, "This segment will take six minutes."  The next segment might be four minutes, or eight minutes.  It broke up the monotony of the noise coming from the machine, and gave me something to look forward to.  All in all, I was on the table for a little over three hours.

We wouldn't meet with Dr. Akthar until 4:45 p.m.  We had some time to kill.

We drove around the areas that used to be so familiar to us, when we lived in the Chicago suburbs from 1988 to 2014.  So many things have changed, but at the same time, so many things remained the same.

Being able to eat, and taste just about anything, has been such a pleasure.  There are no shortages of great restaurants in the Chicago suburbs.  We stopped and had lunch.

I'm not sure if it my age or the medication, or maybe a combination of the two, but it seems that after lunch, I need to take a nap.  We stopped at a Home Depot so that Kathie could check out the gardening section while I caught some ZZZ's in the parking lot.  I slept for about an hour, which only put us to 2:00 p.m.  We still had almost three hours to kill.

We drove around some more and before we knew it, it was time to see Dr. Akthar.

We first met with my nurse, Kim, who took my weight and vitals, and went over medication, and how I am doing in general.  I lost eight pounds since my last visit, which honestly means that I probably lost closer to ten or twelve pounds when I wasn't eating.  I've been gaining weight over the past couple of weeks.  

My current symptoms are fairly manageable. In a quick overview, my entire left face is numb from my scalp to my chin.  I have lost about 90% of the hearing in my left ear.  My left eye is still not tracking with my right eye, and my vision has been blurry in my left eye since the last couple weeks of treatment.  I still have the random nerve spikes that come on three or four times a day.  

Dr. Akthar came in to review the latest MRI's.  There were three areas of concern from the beginning; the tumor below my left eye, the "base of skull" tumor, and the tumor near the Mastiod Process, below and behind my left ear.  

Dr. A was pleased to show us that the base of skull tumor was, for all practical purposes, completely gone.  We compared it to the MRI from February that showed a mass, then compared it to the right side, and it looked as normal as can be.  This is great news.  

The tumor under my left eye has shrunken considerably, as well as the tumor below and behind my left ear.  All in all, Dr. A was very pleased with the results.  We will check back with him in September for another MRI.

In the mean time, I will check in with my Medical Oncologist, Dr. Yasar, up here in Minocqua.  I would like to get a Neurologist involved that understands the nerve rebuilding/repairing process.

I'm still trying to figure out what my new normal is going to be.  I've been doing some remodeling projects around the house here, and I'm finding that it is not as easy with one eye.  It takes twice as long to get a simple project finished.  I may need to abandon the remodeling contractor gig, and find something new to do with myself.  I've been kicking around the idea of getting my CDL and being a long haul truck driver.  That would be cool.  I'm sure it would give me a lot to write about.  Or, maybe I could build some Northwoods inspired furniture and sell it in the local shops.  One thing is for sure; there is no shortage of jobs right now.  Everyone is hiring.

I'll keep you all posted as appointments come up and things progress with my recovery.  Thank you for all of your prayers and thoughts.  

Eye Doctor

 I saw an eye Doctor, yesterday.  My left eye is looking worse and worse.  It is constantly bloodshot, my pupil doesn't react as quickly as the right eye, and my vision is blurry.  After close examination, the doctor found that I have a fairly deep cut through the center of my cornea, which is causing the blurred vision.

I suppose it never dawned on me that the entire left side of my face, which includes my left eyeball, is completely numb.  I could have damaged my eye at any point in time, and never felt it, although we both agree that it probably happened in my sleep.  

She grabbed a Q-tip and gently touched it to my right cornea.  My eyelids closed within a millisecond of the swab touching my eye.  That is our natural response to eye pain.  Then she touched it to my left eye.  No reaction at all from my eyelids.  All this means is that my left eye has lost it's level of protection, and is vulnerable to harm at any point in time.  She feels strongly that she can repair my eye and have it seeing clearly with medicine, but, getting it to track along with my right eye is a neuro problem.  She is the newest member of my team.  She sent her findings to all of the other doctors, and will work closely with them to find the answers.

One of the "if all else fails" suggestions that she threw out is to surgically center my left eye.  This way, they could train my right eye to track with the left so that I can have binocular vision when looking forward.  Interesting idea...

All things considered, with the exception of my left eye, I could easily live with all of the other neurological deficits that are a part of this cancer journey.  For the most part, my left face is just numb - from the top of my scalp, forehead, entire eye area, cheek, nose, jaw, upper and lower left teeth, gums, half my tongue, and half the room of my mouth - just completely numb.  I've bumped my head against things so many times.  If it wasn't for the abrupt stop of my head, I'd have never known it.

I get these crazy, shocking nerve pains every now and then, but only a few times a day.  I still get the "worm under the skin" crawly feelings, but not constantly, like early on in my initial symptoms.  I've gotten used to them and don't react anymore. 

But now, I believe that the mosquitos have figured out that the left side of my head is fair game.  I can't feel them land on me, much less bite me.  To make matters worse, I've lost about 90% of my hearing in my left ear, so I can't hear them buzzing around either.    

I have to make sure that I put mosquito repellant on.  The upside is that the bites don't itch!  I look in the mirror and see a bunch of red spots, and think, "Dang it, they got me again."  Fortunately, we always have a breeze blowing on our property, which minimizes the mosquitos ability to find their targets.

I began to take an inventory of material that I have onsite for the house renovation project.  I never knew that I had so much.  Typical of me, I would get excited about a phase of the project, buy the material and bring it home, then get distracted by another project, buy more material, and the cycle begins again.

I've been tackling some projects around the house.  All Kathie has wanted since we moved up here is a screened porch overlooking the lake.  As it turns out, I had all the material to build the deck, so I began that phase a few days ago.  What would typically be a three day project has taken me ten days so far.  I just can't seem to keep a normal pace anymore.  I like to blame it on the cancer, but I'm afraid it might be age.

I feel like I am in a holding pattern.  I need to start working again, but am hesitant to do so, not knowing if the cancer is gone.  What if I start working then find out that I need to go through more treatment?  

Next Tuesday the 22nd, I head back down to Chicago for my follow up exam and MRI.  We should know more after that point.  

Blue masking tape

I haven't updated in a week or so.  Some things are slowly improving, while others stay the same.  One thing is for certain; this is going to be a long recovery.

In the last post, I talked about "dry mouth".  Not being one to sit around and wait for something to change, I took matters into my own hands to solve the dry mouth issue.  This came in the form of a six inch piece of blue masking tape.  Yes, I decided to tape my mouth shut while I was sleeping.

Before retiring to bed for the night, I made sure that my sinuses were as clear as could be.  I blew out whatever would, then sprayed the nasal decongestant into both nostrils.  By the time I hit the pillow, I was breathing freely through my nose.  I securely taped my mouth shut, and quickly fell asleep.

I woke up six hours later, mouth still taped shut, and moist as can be.  My sinuses were just starting to clog up, but six hours of sleep, and a normal mouth, sure felt like a victory to me.

I went through the same routine the second night.  This time I woke up after four hours, which was a little disappointing.  Sinuses were already starting to clog up.  I went ahead and got up, sprayed the nostrils a second time, and went back to sleep.

The third night, I woke up after only two hours of sleep, gasping for air as my sinuses quickly clogged up.  To be honest with you, it scared the heck out of me.  Waking up in a panic, desperately trying to rip the tape from my mouth, for a split second thinking, "Is this how I am going to die?"  How would my grandkids, Quinn and Joe explain their grandfather's demise?  "He taped his mouth shut before he went to bed, and he suffocated."  "Why did he do that?" they would be asked countless times.  "I don't know." would only leave the inquiring person asking more questions.  Eventually, they would simply say, "He died of old age" and leave it at that.

I've given up on the tape idea, and consoled myself to the fact that I'm going to have to wait this one out until it heals on it's own.

I called Northwestern to find out about my follow up MRI and appointment.  They told me that it was my responsibility to set up the appointments.  NW has treated me very well through this whole process, but this was, well, ridiculous.  

I literally had to call Central Scheduling and find out when they could do the MRI.  Then I called Dr. Akthar's office to see when he could see me to review the MRI.  Then, I called Central Scheduling to see if they could do it according to Dr. Akthar's schedule.  We went back and forth a couple of times before settling on June 22nd at 7:30 a.m.  Had I known it was my responsibility, I would have done this four weeks ago.  Is this not about the stupidest thing that you have ever heard of?

I'm very disappointed in how it was handled.  So, the bottom line is that I won't know anything for another three weeks.

Kathie had an eye appointment a couple of weeks ago, and I went to the appointment with her.  I mentioned my situation and asked if they would look at my left eye.  It doesn't look good, and I can't see clearly anymore.  I have an appointment to see the eye doctor on June 15th.  Hopefully, they can tell me whether or not the damage looks permanent.

As of now, the sore in the throat is almost completely healed.  I still have to watch what I eat, but I can eat any type of soft foods.  Breads of any kind just soak up what little moisture I have in my mouth and turn into a wad of paste, securely stuck to the roof of my mouth.  I can eat a burger without the bun.  I am still limited to chewing on the right side of my mouth, although I have been practicing chewing on the left.  

It just feels strange since I still have no feeling in my left teeth, gums, or the inside of my left cheek.  It feels more mechanical.  The sensory input from all of the above, signal when you should chomp, grind, or otherwise, chew your food.  Interesting that our brains monitor all of this action without us even knowing it.

I can taste again!  Well, almost everything.  You never realize what a factor salt plays in the flavor of the foods we eat, until you can't taste salt for a while.  So, salt flavor is back!  That's a huge plus.  The reason I say that I can almost taste everything is that I remember things tasting a certain way, and they don't taste quite like that anymore.  I'm sure Janine, the nutritionist, will tell me to cut out the salt for my general health.  She's right, but not right now.

No signs of the hair on the left side of my face growing back.  I have been rocking the half goatee for a while now.  We were wearing masks for the longest time, so no one could tell.  Then it became an ice breaker to start a conversation.  But, yesterday, Quinn asked me to shave it off since it looks "silly".  Leave it to the wisdom of a six year old to put things in perspective.

My strength is almost 100%.  But wow, am I out of shape.  Every time I do something physical, that I would normally do every day, my muscles are sore for the next two days.

I'm exploring options of what to do for work, presently, and for the next ten years.  I don't feel that I can go back to doing carpentry, full time.  I never realized how debilitating having only one eye is.  It messes with your depth perception.  I'm still capable of doing the work, it just seems to take twice as long.  My eye still may heal, but it is not going to happen overnight.  Any short term employment suggestions would be appreciated.

Otherwise, we are enjoying some amazing summerlike weather up here in the Northwoods of Wisconsin.  Highs near 90 deg.  The water is warmish, but feels good.

Dry mouth

The sore throat is getting better.  I have been able to swallow without pain, which is a huge blessing.  Of course I had to push it to it's limits and attempt a bowl full of Guacamole with tortilla chips.  Chewing the chips was a challenge, but I just had to take my time.  Then I started getting a little cocky and eating a bit too fast.  Too big of a bite of guac, with some semi-chewed chips dragged across the sore area and opened it up again.

My "I'm in pain" dance resembles something like a rooster strutting around while stomping his feet and screaming like a school girl.  Fortunately, few have been around to witness it. Wow, did that hurt.  That set me back a few days of healing.

Today, the inflammation activity is around my left eye.  It has been nearly four weeks since my last treatment, and I can still feel the protons at work.  The radiation is diminishing.  Soon, it will be gone and I will be left to find what the healing process will look like.

Although I am able to keep my positive attitude through this, I have to admit that it is starting to get a little tedious.  I don't like the unknowns.  If they told me that this is as good as it is going to get, I could wrap my head around it and push forward with this being my new normal.  I still haven't been scheduled for my four week MRI and evaluation.  I hope to have answers at that time.

Of the lingering side effects, the dry mouth is by far the worse.  That Mucositis, that we talked about before, prevents mucus from being formed in the mouth and throat areas.  This is made worse when you begin to, subconsciously, breath through your mouth.  The sinuses are constantly drying up blocking air flow, so before you know it, your mouth and tongue are as dry as the Sahara Desert.  You can't swallow, and you can't even talk.  

They recommend that we wash out our mouths with a baking soda/water rinse, to wash away the dried up heavy mucus and moisten the mouth.  For any cancer patients that are reading this, understand that this is very important.  But, even more important is keeping your sinuses clear.  You have to do whatever it is that you have to do, in order to survive this.  I use over the counter Oxymetazoline HCI 0.05% Nasal Decongestant spray (Afrin brand).  The doctors warned that using a nasal spray will dry out your already dried out sinuses, but to me, it is a small price to pay to keep the mouth from drying out.

When my mouth dries out, so does the sore.  This prevents it from healing, and the cycle starts again.  I spend all day keeping my mouth rinsed out, keeping my sinuses clear, and allowing the sore to heal over.  Then, I to go to sleep at night, where at some point, I start breathing through my mouth, which dries it out again.  I'm thinking that I might try taping my mouth shut.  Would I wake up if my sinuses clogged up and I couldn't breath through my nose?

Our daughter, Kate, came up to spend a week with us.  We haven't actually seen Kate since her wedding three years ago.  She and her husband, Phil, live in Carbondale, in Southern Illinois.  We are all enjoying her company, especially Quinn and Joe.  

I should be heading back to the Chicago Proton Center in the next week.  As of right now, none of my nerve issues have resolved.  This will take time.

    

What were you thinking?

The protons are still alive and well, doing their thing inside my head.  My red, puffy cheek on the left side is my barometer of the activity of the protons.  When the inflammation goes down, then I will know that I have reached the end of the treatment, and healing will resume.

Until then, I will continue to make the best of it.  My strength is returning.  I've been taking care of some necessary things around the house, such as doing some work on Kathie's car and loading my dump trailer for a run to the dump.

And, then there is this:  Since we moved in, we've had a problem with the sewer line for the master bath periodically clogging up.  It clogged during the first winter we were here, and stayed clogged for four months until it thawed.  It clogged again, so it was time for me to get down to business and figure this thing out.

I know that the line exits the crawlspace between the two bathroom windows.  To add to the complication of the search, there is a ten foot concrete slab coming off of that wall.  I know where the septic tank is - one hundred and twenty feet away.  Other than that, I was clueless as to where it was routed through the yard.  

I started by digging up the ground at the edge of the concrete slab, ten feet out from the bathroom windows.  It seamed like a logical place to start, but in reality, it was like looking for a needle in a haystack.  I dug about a four foot trench, three foot deep, and found no line.  I began to drive myself crazy thinking, "Maybe I'm not deep enough, or, maybe I just need to go five more inches to the left."  I spent an hour and a half messing around and found nothing.

I decided to start at the septic tank and work from that side.

There is a twenty four inch diameter concrete cap that sits above ground, marking the location of the septic tank.  I started there, dug down about twenty four inches, and found the top of the tank.  I started digging across the top of the tank, in the direction of the bathroom, hoping to find the edge.  How big is this tank?  I passed forty eight inches, no edge.  Ninty six inches, still no edge.  I finally found the edge at twelve feet from the concrete cap.  I don't claim to know a lot about septic tanks, but this thing is huge!  It turns out to be 2100 gallons, which is about twice as big as needed for this house.

I found the line and got a good starting point.  I dug a second hole about three feet away, and got a starting direction.  I dug a third hole ten feet further, and couldn't find the line.  

I could drag this out and go through all twelve holes that I dug, in order to narrow down where the plug was, but I suppose you can imagine that it was a test of my patience.  It turned out to be a ten foot section of pipe, close to the concrete slab, but still eight feet away from where I had dug before.  A tree root had grown along the pipe for decades, and as the root grew bigger, it caved in the bottom of the pipe.

I cut out the old pipe, along with the root, and was ready to proceed with the repair.  Then the thought crossed me, "I should probably take a look up the pipe and make sure that it is free."  (You all can probably predict where this is going, but not yet) So, I hung myself upside down in the ditch and proceeded to look up the pipe with a flashlight.  

I couldn't really see much, so I decided to take it one level further and flush out the pipe.  I turned on the tub, since it has the highest water flow, and went back outside to watch for clear water flowage.  Two minutes went by and nothing.  After three minutes, I started to think something was wrong.  At four minutes, I decided to take a look.  

What possessed me to hang upside down in the ditch, and shine a flashlight into a pipe that I know is filling full of water, and getting ready to let loose any second?  I don't know.  All I know is that at the exact time that I got into position, and was able to focus up that pipe, the light caught the reflection of the white toilet paper of a previous usage, coming at me at possibly 1000 FPS.

Thankfully, I was able to pull myself up just enough to avoid a face full of solid waste.    

I replaced the pipe section, and now we are good as new.  Filling in all of the holes I dug was no fun, but I did have little Joe out there with me, climbing in and out of the holes.  He's such a great little guy.

The sore in my throat is still killing me.  I've been living off of liquid protein drinks, and liquid meals.  I'll keep working on my strength.

As of now, there are no signs of any my neurological deficiencies restoring.  I'm sure that they will repair in their own time.

I'll keep you posted as always. 

 

The magic pill

This week has been rough.  The burn on my face has completely healed, which is something to be happy about, but this sore in my mouth is killing me.  I have been surviving off of protein drinks, but having a hard time keeping up my calorie intake.  I'm slowly losing my belly that I gained in the first three weeks of treatment, so that can't be a bad thing.

I woke up Monday morning, and decided to reach out to my friend, Nancy, at the Minocqua Marshfield Clinic.  I was hoping to have her look at the sore in my mouth and prescribe a magic pill that would permanently eliminate the pain.  

While I was waiting for Nancy's office to call, Dr. Schreiber's office called and said they had received a request for an appointment for me.  You may recall that Dr. Schreiber is the Ear, Nose, and Throat specialist that performed the crazy biopsy surgery through my left nostril.  I assumed that Nancy's office called Dr. Schreiber's office, so I made an appointment.

As it turns out, Nancy's office called later, which was embarrassing.

I was excited to see Dr. Schreiber.  If anyone knew what to do about a radiation induced sore in the mouth, it would be him.  He works closely with the Head and Neck Cancer Oncology team.  The appointment was Wednesday at his office in Marshfield, WI - a two hour and twenty minute drive from Minocqua.

I arrived at his office on time, and was brought into an exam room without much delay.  He took a quick look at the sore in my throat and commented that it looked very sore.  From there, he checked out my left ear, suctioned out a whole lot of ugly stuff, and proceeded to my nose and sinus areas.  The radiation has caused my left nostril area to get impacted with heavy mucus, so he spent some time cleaning it out - more ugly stuff.  He went up there with his scope to get a good look at what was going on.  Knowing I like to see this kind of stuff, he video taped his excursion up my nose.  I was able to see the areas that are enflamed by the radiation, compared to the healthy tissue.

With all of this said and done, I asked Dr. Schreiber about the sore throat.  He said, "It's only been twelve days since the last treatment.  Those protons are still doing their work.  Give it a couple more weeks and it will heal on it's own."

What?  No magic pill to make this pain go away?  I don't know if I can survive another couple of weeks on a liquid diet.  My saving grace is the Lidocaine solution that Dr. Akthar prescribed.  I put a squirt of it in my mouth and it numbs the pain for about four minutes - just long enough to chug down a liquid meal.

Normally, I would eat anything, but there are a few things that I would rather not eat, given the choice.  Being on an all liquid diet for the last three weeks has changed my outlook on food.  For example, Al's Pizza in Warrenville makes a tasty, but very greasy, pepperoni pizza.  You can practically change the oil in your car with the amount of grease the comes off of one large thin crust pizza.  Normally, I wouldn't eat it, although Kathie and the girls absolutely love it.  Right now, I would seriously drive six hours to get one if I could only chew, swallow, and taste it.

In the pantry are several boxes of Kraft Macaroni & Cheese, Hamburger Helper, and cans of Chef Boyardee Beefaroni - things that Quinn & Joe might eat, but I would turn down due to better choices in the frig.  Right now, I would love nothing more than to devour a can or two, if I could only enjoy it.

So, the bottom line is this; I need to gut it out for a couple more weeks.  My energy level is still pretty low.  I'm getting up and doing things that need to be done around the house.  There have been several "Joe sightings" around town as I make trips to Ace Hardware in my truck.  I can't wait to get back to work, just not yet.

Thank you all for your messages, your thoughts, and your prayers.  I'll keep you posted if anything changes.

  

Long way to go

I made it home safely without a single mechanical problem, traffic accident, or police altercation.  No telling what carnage I may have left in my wake. but heh, I made it home unscathed.

Just kidding.  The truth is that I find it easier to drive with one eye than it is to walk.  This will all take a little getting used to.

Hopefully, I will start to see some improvement in the next couple weeks.  The protons from the last treatment will remain active during this time.

To tell you the truth, I've been trying to update this blog for the past four days.  This last week of treatments were brutal.  One thing that I have learned is that the good doctors and nurses at Northwestern tend to down play the horrors that wait ahead.  They have to, otherwise, no one would agree to having treatment.  "You will have some burning, much like a sunburn...", "Fatigue is a side effect of proton therapy...", "You will have a sore throat..."

Dr. Akthar warned that the last week would be the most intense.  That is code for; "This last week of treatments will sap every ounce of energy from your body, leaving you a helpless blob of humanity with no recourse but to lay in bed, mostly in the fetal position, and moan loudly."

It has been tough.  I had to stop on the drive home, and take an hour-and-a-half nap, just to make it home safely.  I've never had anything that comes close to feeling this fatigued in my life.  This will all be behind me soon enough.

The worst is the "Trifecta of discomfort".  I mentioned mucositis before.  One of the problems is that it stops producing mucus to keep your mouth moist.  So, you have dry mouth.  Next, the treatments have my sinuses completely stuffed up, so I can't breath through my nose. This causes me to breath through my mouth which adds to the dry mouth.  And third, there is this sore in my mouth that is painful, non-stop, and makes it difficult to swallow anything.  It also is aggravated by the dry mouth.

My only relief is an oral lidocaine solution that I swish around in my mouth for a minute, and spit it out.  This gives me about five minutes of relief to take my meds, or chug down a protein drink.  I have started taking a multi-vitamin/multi mineral tablet to supplement my diet.  Man cannot live on protein alone...

Mornings are better than evenings.  You might see me out and about in the mornings, but I am down for the count in the afternoons and evenings.  

I have a telephone conference with Dr. Akthar, and the nurses, this afternoon.  He will give me words of encouragement that will assure me that this will all be over soon.  And, it will be.  I know that.  That is why I try not to focus on the present, but look forward to what next week will bring.  And, the week after that, and the week after that.

This is a journey, and it won't be over soon.  Thanks for joining me.  We have a long way to go. 

I crossed the finish line

I ran a good race.  I crossed the finish line, and the crown is mine.  Now comes the recovery period.  The protons that I received today, will still be doing their job for another two weeks.  The sore in my mouth will slowly heal.  The pain in my ear will slowly go away.  And, hopefully, my left eye will begin to work properly, tracking with my right eye.

As predicted, I have lost most, if not all of my hearing in my left ear.  That's OK, I can live with that.  I am so thankful that Dr. Schreiber put the tube in my left ear.  I remember him saying, "No matter what, you will need this when you start radiation therapy."   He was right.  The cancer tracked right through my left middle ear, following the smallest part of the facial nerve that controls the smallest bone in our body -  the Stapes.  The Stapes is one of three bones in our middle ear that take the vibrations from the eardrum, and send them to the Vestibule for interpretation.

Dr. Akthar told me that if the cancer didn't destroy my middle ear, the treatments would.  These last five treatments have targeted this area of my ear, and the tumor on my sixth cranial nerve that has my left eye going crossed.  I hope to see improvement in these areas in the coming weeks.

I have been using a product called "Domeboro" on my burned skin.  It is some kind exfoliant that slowly takes away the burnt skin.  I just mix it up in a small pot, soak a clean washcloth in it, and lay it on my face for 10-15 minutes.  It washes away the dead skin and promotes new skin growth.  I am no longer bleeding all over my pillow.  I'm not going to go as far as to say I have baby skin, but it's a start.

Tomorrow is my long ride home.  It's normally 5 1/2 - 6 hours.  I am planning at least one rest stop along the way.  Don't worry, I'm fine.  I will be safe, not take chances, and get home just fine.  Probably passing through Minocqua about 5:30 p.m. or 6:00 p.m.

Just as a warning, the Joseph Carpentry truck will be driven by a one eyed cancer patient with radioactive protons in his head.  You might want to steer clear.   

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.