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.