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.