Hope to hear from you all soon.

 I had mentioned in the last blog that my extended family all wanted to come out and help.  For the first round, my dad, and brothers Martin, Jim and Dave had come out.  I spent most of my time in the hospital or doctors appointment, so I didn't get to see a lot of the guys.  My Mom and sisters, Roseanne and Mary, arrived a few days later, along with my daughter Jessica, who drove up from Chicago.

It was so great to have them here, although selfish for me.  Being able to spend time, bonding with all of the brothers, and dad is what every guy needs.  Dave is technically my brother in law, and since we have lived on opposite side of the country since they have been married, we've only had about a dozen occasions to sit down and get to know each other.  What a great guy, Mary picked a good one.  My Dad is obviously the best.  He taught me the basics of every thing that I know and do every day.  He knew that I was an explorer, an "out-of-the-box" thinker.  I wouldn't stop until the problem was solved, the repair was made, and the project was finished.  Young men need direction.  As a matter of fact, there are three things that every young man needs to hear from his dad or adult role model to set his direction in life.  (1) I'm proud of you, (2) You are doing a great job, and (3) I love you.  That's the kind of guy my dad is.

Martin and Jim were always about pushing me around, pushing me up,  pushing me further, but not necessary compassionately.  As we grew as adults, we learned that we started to have a lot more in common than we thought.  We began to talk more on the phone, and spend more time together, usually disguised as a work project.  Oh, and there was always the annual family get together in Palm Springs, CA that brought us together.  

The reason I'm telling you all of this is because I hear of too many brothers that, for what more than an argument years ago, has kept them apart.  Brothers are flesh and blood, and my favorite people on the planet. If I didn't have the relationship I have with them, do you think they would have hashed this whole plan to come out and help - knowing good and well that I would have rejected it had they asked me first?  It makes me sad to think that I will never be able return the gesture.

The girls, on the other hand have never had a problem expressing their feelings for me.  Luckily for me, I have two very loving sisters.  Otherwise it could be a mess.  Kathie and I went through a rough time years ago.  I was wrong and they really came down hard on me.  I'm glad they did because not only did they help save my marriage, it brought me closer to them as well.

Then there is my Mom.  As a boy (or even a big boy now) there is nothing more comforting than sitting down next to each other, holding each other for one of those Mother/Son hugs that you hope will never end.  I suppose that I was always a bit of a momma's boy, because this boy loves his mom.

They came here with no real plan or agenda, but to help.  They cleaned up around the property, organized things, worked alongside Kathie, our Jessica, and me, by helping us navigate the ins and outs of hospice.  They were like a flock of angels that swooped in, and took care of business.

I understand that there are quite of you wanting to help in any way you can.  When it comes to physical labor, I think that part is taken care of.  Although, Kathie is talking about having a garage sale, which I know she could use some help.  And, by "needing help" she would need to have someone, have it for her.  

As for me, I need some good old fellowship times.  Guys hanging out with guys, talking about life, friendship, and faith.  That's what keeps me moving forward.  Since my vocal chords gave out, it has become more and more difficult to accept invitations to meet up and talk.  If any of you want to come on over , please do.  Just remember, I can answer yes and no pretty efficiently, then, that's were the language barrier kicks in.  It will still be a good time.

Once again, a very special thank you to my brother Jim that worked into the wee hours knocking down a long list of small projects, that wouldn't have been without him.

Jamie lives with us and has her hands full with Quinn And Joe.  She does whatever she can to pitch in.  She's always there when I need her.

But most of all, my very special daughter Jessica that learned her woodworking skills from watching me renovate house after house after house while she was growing up.  She doesn't do it for a living, but easily could.  She finished her list while helping Kathie and her aunt's figure out the whole Hospice network.

God Bless you all.  Text me if you want to get together.

Out in the open.

So much time has passed since my last blog post.  These last three months have been rough. So many changes that had to be sorted out.  New symptoms that could be a part of the healing process, or could be a sign that the tumor is spreading.

There were good changes, and bad changes.  I was, again, able to chew and swallow, with no pain.  I could taste again.  My hair was growing back where the radiation had burned it off.  These were all signs that things were healing - good things were happening.

I lost a tremendous amount of weight.  I started at 195 lbs., and am currently at 160 lbs.  It continues to drop to this day.

I kind of feel bad for keeping you all in the dark.  But, we weren't sure until just recently, what was happening.  Things were changing and evolving everyday.  I honestly didn't know what to say.

I met with my Medical Oncologist, Dr. Yasar, up here in Minocqua, back in July 2021.  It was a scheduled visit - a follow up from the last visit.

She asked if I had any new symptoms to report.  I have lost, well, half of my voice since we had last met.  I also have trouble swallowing, in that, I can chew and swallow, but it will get stuck half way down - just below my trachea.  At least I can still breath.  The only way to get it to go the rest of the way down is to drink a couple of gulps of water to wash it down.  Then, I found that when I swallow any type of liquid, it tends to come out my nose.

She suspected that the tumor is still growing and spreading.  The symptoms indicated that the 9th and 10th cranial nerves were now involved.  Not good news, since the 9th and 10th originate in the bottom portion of the brain stem (Medulla Oblongata), while the 5th, that has been involved from the beginning, originates from the upper (Pons) portion of the brain stem.  The only route the cancer could have taken to get from the top to the bottom, is through the brain stem.  Really bad news.

I remember reviewing the November 2020 MRI with Dr. Neal, almost a year ago.  He pointed out that, whatever this thing was, had tracked along my 5th cranial nerve and had reached the Pons area of the brain stem.  He referred me to Dr. Lee and Dr. Yasar in the Oncology department in Minocqua.  It had not yet penetrated the brain stem, but was right there.  

Back to my July 2021 visit with Dr. Yasar, when it was all said and done, she felt that there was no more treatment for a cure.

She sent a referral to a local Ear, Nose and Throat specialist, Dr. Min.  I saw Dr. Min on August 11, 2021.  She scoped down my nose and looked at my vocal chords.  She found that my right (yes, right) vocal chord is paralyzed, making it hard for me to speak with any volume.  I asked her to give it to me straight, and she did.  Not only has the tumor spread through my brain stem, it is now effecting the cranial nerves on the right.  I don't want to quote her because I was in a bit of shock and I don't remember exactly what she said.  But, the jist of it is that there was a better chance than not, looking back to November 2020 MRI, that the tumor would invade the brain stem.  I said, "Wow, that sounds terminal".  She said, "Yes, it has been from the beginning".

I'm not sure if it was my overly optimistic attitude that kept me from hearing the truth, or maybe their reluctance to give me the bad news (assuming that one of the other doctors already had).  Either way, I missed it.  This is why it is so important to have another person along with you when meeting with doctors.  Like most guys, I tend to not ask enough questions.  But, in all fairness, in November 2020, no one knew what it was.  Cancer was suspected but not confirmed until January 2021.

Back in November 2020, Dr. Neal referred me to Dr. Lee - Radiation Oncology at Marshfield Clinic in Minocqua, WI.  I met with Dr. Lee who went over the scans in great detail.  He explained that with the extent of tumor growth, and the type of radiation that he uses (Intensity Modulation Radiation Therapy - IMRT), the radiation would most likely kill me if we tried it.  He spoke of palliative care, which is given to patients to give comfort.  Most often when they are terminal - or, when there is no more cure based treatments available.  That should have been a big red flag for me.

I remember saying, "Is that it?  Is this the end of the line?"  He suggested proton beam radiation therapy.  It is only available at Mayo in Rochester, MN or Northwestern in Chicago.  As you know, I went to Northwestern.

Back to the present.  On September 4, 2021, I was just feeling lousy.  Head ache, neck ache, back ache, dizziness, my walking gate had changed, I would get nauseous and throw up - something was definitely wrong.  Kathie took me to the ER, but there wasn't a lot they could do.  The ER doctor put in a call to Dr. Yasar's office to call me.  Monday was Labor Day, so on Tuesday, I got ahold of Nancy, my good friend, Nurse Practitioner, and strong advocate, from Dr. Yasar's office.  

I was scheduled to have an update MRI at Northwestern Proton Center in Warrenville, IL, on the 17th of September.  Nancy felt it shouldn't wait so she put in an emergency MRI request, contacted my insurance to make sure it was covered, got with Northwestern to keep them in the loop, and got with Radiology to contact me with a time.  Thank you Nancy for really looking out for me.

I was on the table, having my MRI the very next day.  Nancy called me in the next day to review the results.  Kathie came with me.  She started by saying that she called me in because she couldn't say it over the phone.  The news was bad.

The pathology report came back that I have a condition called Leptomeningeal Carcinomatosis, which means that the cancer is present in the cerebral spinal fluid that surrounds my brain and circulates through the spinal chord, nourishing every nerve in my entire body.  If there was such a thing as a "worst case scenario" in the cancer world, this would be it.  There's no coming back from this.

I find it interesting that we can look back at all of the symptoms and see the whole picture with clarity.  But, when things are unfolding in real time, the truth is that we have no idea the full extent of what would come next.  I was asked questions such as, "Have I noticed a difference in the tone of my voice?"  At that moment, I would answer, "no".  Or, "Have you experienced a fever?"  No, again.  Then two days later, I answer yes to both.

Then it is decision time again.  The doctors give a couple of options to try.  I could easily turn them down and not do anything.  But, shouldn't we at least try?  I was given an option of Immunotherapy/chemotherapy.  It's all experimental since each cancer acts differently in each patient.  I decided to give it a try and see what happens.

On Monday, September 13, 2021, I sat in the chair and was loaded up with chemicals that, under certain circumstances, would kill a horse.  Day one, came and went without any problems.  The regimen called for the third component being administered slowly, by way of a portable pump, over the coarse of one week.  Even still, by the end of the five days, no problems.  The pump was removed on Friday.

Day six, Saturday, is when the it all went terribly wrong.

I'm not writing this to discourage anyone from getting treatment that could very well save their life.  Each cancer is different because each patient is different.  In my case, I had a less-than-desirable outcome.

I went from eating with the help of washing it down with a quart of water at each meal, to new and worse mouth sores than ever before.  I went from being very well hydrated, to so dehydrated that I woke up Wednesday morning September 22, 2021 feeling that my organs were shutting down.

Did I tell you that I have the most awesome family in the entire world?  Those who know my wife Kathie, daughters Jamie, Kate, and Jess may already know this.  But, what you don't know is that my Dad, and brothers Martin, Jim, and Dave, bought plane tickets and flew out here Tuesday to help in anyway they can.  Jess drove up from Chicago to help Jamie and Kathie.  

I woke Jim at 4:00 a.m., on Tuesday morning, asking him to take me to the hospital.  He and Martin threw me in the back seat of the car and hauled me off to Marshfield Hospital in Minocqua.  Four 100ml bags of standard saline later, and I was just starting to feel better.

The sores in my mouth, this time, were keeping me from eating or drinking anything.  We all agreed that the most practical way to keep me alive was to have a feeding tube inserted in my stomach.  I am now able to control what I eat and drink, with no pain.  Maybe a little messy, but we are getting better with practice.

I signed the paperwork today to be officially placed in the Hospice Program.  They will do whatever they can to make me as comfortable as possible.  Three to six months is what they are hoping for.

Please don't be sad for me.  There is still work to be done in the time remaining.  Now that it is all out in the open, I can be free to get back to telling my story, in hopes that someone, faced with the same problem might find a little inspiration in my words.

By the way, my Mom, and sisters Roseanne and Mary are planning on coming next week to spend some time.  They say that you don't get to pick your family.  I'm glad I had Someone with a little better handle on things, pick mine for me.

Recovery

Again, it's been a while since I have written.  Not for a lack of things to write about, that's for sure, but maybe more of a lack of enthusiasm.  

Recovery is the toughest part of this journey so far, and to be perfectly honest, it is difficult to keep any sort of positive attitude through it.

Everyone is different in the way they handle the news, when they first find out they have cancer.  Is it terminal?  Is it treatable?  How much time do I have?  What are my next steps?  You meet with your Oncologist and create a plan.  No matter what the treatment plan is, you find hope and comfort in doing something that will change the situation for the better.

During treatment, we endure the side effects that come along with radiation, chemo, and surgery.  For me, the radiation burns were bad.  On my face, and in my throat - both made it impossible to live normally.  But, there was hope and comfort in knowing that it was all temporary.  It was the means to a better end.

I could wake up in the morning with a smile on my face, and a positive outlook for the day.  I would head over to the Proton Center, excited about another treatment.  Everything was going according to plan.  The cancer was being destroyed in real time.  It was a time to be optimistic.

There was good news in my first post-treatment scans.  The plan had worked.  The cancer was being destroyed.  That's when I stepped from the treatment phase to the recovery phase.

Recovery is the time that it takes to recover from the treatment.

In recovery, there is no plan.  There is no way of knowing how long it will take to heal what was damaged, either by the cancer itself, or during treatment.  Every patient's treatment is different, and every patient's recovery will be different.  

The most frustrating part for me is that there is no one-doctor that knows everything about my situation.  I have a team of doctors that keep up on my case by reading the notes left by previous doctors.  They are all specialists in the fields that they practice.  Is it foolish for me to think that any one of the doctors on my team has read my entire file?  I would like to think that they have, but realistically, I am one of dozens of patients for each of them.  Honestly, who would have time to?

I have one oncologist telling me that they feel all of my nerve damage will heal in time, while another oncologist says that the nerves will never heal.  Although these doctors have been great through this process, they are cancer specialists.  Shouldn't a neurologist be the one to answer that question?  Oh, sorry, you can't see a neurologist without a referral.  Who is going to write the referral?  Your primary care professional.  You mean the guy that I have yet to meet, that knows the least about my case.  Yes, that's the one.

I will meet with my new PCP at the end of this week.  Hopefully, he has read my file and is up to speed on my case.

I'm still on schedule to return to the Chicago Northwestern Proton Center on September 17, 2021 for another round of MRI and doctor review.

At this moment, I am in Palm Springs, CA, visiting with my parents.  We had a Cunningham Family Reunion this past Saturday.  It is crazy to think that of my parents five children, they have twenty-seven grandchildren, and (I believe the count is) nineteen great-grandchildren.  Most were present on Saturday.  It was a great time to connect with our parents, catch up with our brothers, sisters and cousins, talk with our nieces and nephews, and try to remember the names of all of the great-nieces and nephews (and who they belong to.)

I am blessed to have such a huge, loving, supporting family that truly cares for one another.  It makes me sad to hear of siblings that haven't spoken in decades.  Sure, we've had our times of disagreements, but in the end, we have always come back together as a family.  That's what is important.  I couldn't imagine taking this journey with them.  

Joe's famous meatloaf

On the subject of eating, I decided one day to really give my taste buds a special surprise by making my famous meatloaf.  I honestly did come up with the recipe myself as a way to prepare ground venison.

My next door neighbor down in Du Quoin, IL, Jeff, was more of a hunter than a consumer of fine southern Illinois white tail deer.  About two weeks before each deer hunting season, he would come over with a couple of Walmart bags full of last years frozen deer.  There would be tenderloins and steaks, and usually about ten pounds of ground venison.  Venison is a very lean meat that, when prepared properly, has an amazing taste.  The tenderloins and steaks are to die for, but the ground meat is a different story.

The problem is the lack of fat that won't allow ground venison to hold together in the shape of a burger.  It falls apart on the grill unless you mix it with a more fatty meat like pork.

So, here I am with ten pounds of ground venison, trying to come up with an idea to use it.  I don't want any of you to think that I am some kind of culinary genius, but I am going to lay on you the second of the only two recipes that I ever came up with.  The first being my breakfast bowl.

The beauty of it is that you can use a lean ground beef in place of the venison, which is what I did a couple weeks ago to satisfy my craving for something I could actually taste.  Let's get started...

List of ingredients for the meatloaf:

1 lbs. of lean ground beef (or venison, which is even better)

1 lbs. of Jimmy Dean Hot Sausage

1 box of Stove Top "Savory Herb" Stuffing mix

1 egg

1 cup of water

1 medium sized onion, finely chopped

1/2 a bulb of garlic, finely chopped (I like a lot of garlic.  If this is too much for you, use less)

1 pound of bacon

List of ingredients for the garlic/mushroom cream sauce:

The other half bulb of garlic (Again, if this is too much for your taste, use less.)

1 pound of mushrooms, sliced.

1 stick of butter

1 pint of heavy whipping cream

Pre-heat the oven to 375 deg.

Line a 9X9 baking pan with the bacon, with the ends touching down the center of the pan, and the excess hanging outside the pan. 

In a large mixing bowl, combine the ground beef (or venison!), sausage, onions, garlic, stuffing mix, the egg, and the water.  Mix together by hand until thoroughly combined.

Shape the meatloaf into a 9 inch long, 6 inch wide, and 4 inch tall blob of deliciousness.  Put this in the pan on top of the bacon ends.  Criss cross the outer bacon ends over the top of the meatloaf so that the meatloaf is surrounded by bacon.  This will help keep the moisture in, to ensure that the meatloaf stays moist.

Place in the pre-heated oven for about 1 hour and 45 minutes, or until the internal temperature reaches 160 deg.

In the last 30 minutes, place a stick of butter, the remaining garlic, the sliced mushrooms, in a large pan.  Cook until the mushrooms are reduced.  Add the heavy whipping cream and bring to a boil.  Reduce the heat but keep it boiling - this will allow it to thicken up.  Stir frequently. This usually takes about 25 minutes.

Remove the meatloaf and slice.  Smother with the garlic mushroom sauce and enjoy.  It is a flavor explosion, especially for someone that hasn't tasted anything for a while.  

Two quick notes; (1) the garlic mushroom sauce is great on anything. Give it a try.  (2) If any of my Northwoods friends have a freezer full of frozen venison that they want to get rid of, send it my way.  I'm more of an eater than a hunter.

Tasting is about back to normal.  Chewing is adequate, with the right side doing all of the work.  Swallowing, is a different story.  Along with the loss of my voice about three weeks ago, the dry mouth/throat is now effecting my swallowing.  I can chew it up as fine as possible and swallow, but it gets stuck in my throat just below my trachea.  At least this is good in that I can still breath.

I try and try and try to get it to go down, but it is stuck.  The only remedy is to wash it down with water.

I go through 24 - 36 ounces of water in every meal.  Water is good for the kidneys, and Lord knows my kidneys can use all the help they can get with all of the meds I'm on.  The down side - I am having to get up three or four times a night to relive myself.  So much for sleeping through the night.

I'm slowly finding my new normal.  If I can get past all of the side effects, I think it will be smooth sailing.   

Medical Oncology apppointment

There doesn't seem to be enough time to sit down and update the blog.  Everyday, I plan to set aside some time, then life gets in the way and another page is turned on the calendar.  So, I find myself trying to cram as much into one blog as I can, without rambling endlessly, and boring you all as close to death as possible.

This week was my visit to the Medical Oncologist up here in Minocqua - Dr. Yasar.  I'm a little upset that Northwestern had not yet forwarded a copy of the latest MRI they did last month.  Dr. Yasar had the radiology report that she was able to review, and found the results better than she had expected.  

I had a handful of questions to lay on Dr. Yasar:

(1) Does she think chemo is necessary at this point in the treatment?  No.  There would be no benefits to putting me through chemo at this point.  

(2) Does she think that the proton radiation therapy was sufficient for my type of cancer?  At this point, it is hard to tell.  Cancer cells are still dying due to the proton radiation treatment.  I have another MRI scheduled for September, that will give us a better idea of what to expect for the future.

(3) Will this dry mouth/throat ever clear up?  Yes, it will.  It typically takes six months to a year for the side effects to wear off after treatment has stopped.

(4) Will the sore in my mouth ever completely heal?  It will.  How long until?  We just don't know.

(5) How is it that whenever I drink something, it comes out my left ear?  (I have a tube in my left ear because my Eustachian tube is closed.  If I drink something sweet like Coke or Sweet Tea, I literally get sugar crystals in my ear.  I know this sounds really weird, but it is true.)  She referred me to an Ear, Nose, and Throat specialist. 

(6) Will my nerves ever repair themselves and make me normal again?  Most likely not.  Nerves can repair themselves, but they do not regenerate.  The extent of nerve damage/destruction is so significant that it would give me false hope to think otherwise.

OK, well my take away is that I won't be doing chemo, which is a huge plus for me!  This dry mouth/throat thing, along with the sore in my mouth, will eventually clear up.  Also another win!  

The down side is that the nerves may never heal.  That's not the worst thing in the world.  If I end up with no feeling in the left side of my head, deaf in my left ear, and a useless left eye, I can live with that.  So, I bite the inside of my left cheek every time I eat - I can't feel it anyway!  

Seriously, in the seven weeks I was down at the Northwestern Chicago Proton Center, I met a lot of cancer patients.  Some of these people were in a lot worse shape than me.  The guy in treatment #4 that I wrote about, didn't make it.  They managed to keep mine under control, so that it was never life threatening.  I suppose it could have taken a left turn at any moment, and became life threatening, but it didn't.  For that I will always be grateful.

There are four stages of cancer that every patient looks optimistically towards.  The first is treatment.  Whatever the flavor might be for each individuals treatment, it is the hard part.  It might be surgery, or chemo, or radiation, or any combination of them all.  This is the hard part.  Some see it as a badge of honor, others see it as something that they need to get through to achieve the desired outcome.  No matter how you look at it, it is never easy.

The second stage is recovery.  It is the, sometimes aggravating, patience strangling, fear of the unknown, step that keeps us up at night - wondering how many more tomorrows we have left.  This is where I find myself, now.

Third is remission.  This is a time to celebrate!  The cancer has been eradicated.  There is no sign of cancer anywhere.  You are safe, at least for the moment.  Will it come back?  Am I truly free?  Only time will tell.

The fourth is cure.  Enough time has passed that the doctors are certain that the cancer is gone - never to return again.  It almost seems anticlimactic.  You have been through so much.  The sickness that comes with chemo.  The burns that come with radiation.  The risk and healing that comes with surgery.  The waiting to find out what comes next.  The fears that the treatment was enough.  And, the doubts that, even though the doctors give you their 100% assurance that it is over, you still wonder if it truly is.

Cancer is the unwelcome intruder.  It would almost be better if cancer were as quick as a gunshot.  Bang, you're dead.  No time to think, no time to react.  But, it doesn't work that way.  Cancer is the master of torture.  Both physically and mentally - it makes you feel every moment.  It gives you hope in one moment, then strips it away as quickly as it came.  All there is to do is to not let it master us.  Stay ahead of it, keep a positive attitude throughout the whole process.  It is not easy to do, but will make all of the difference in the end - no matter the outcome.

So, I wait.  Still choosing to wake up every morning with a smile on my face, and the anticipation of seeing what the day will bring.  There is still so much to do.  I don't have time to sit around and mope.  He is not done with me yet.

Breakfast with the guys

I had breakfast Tuesday morning with Smokey and Jeff - good friends and members of our trap shooting team, Christian brothers, and two of the most solid men I've ever known.  I haven't seen them since before treatment.  It was a long time coming.

Jeff presented me with a trophy that was inscribed, "Most improved shooter".  As it turns out, of all the participants in our Tuesday Trap Shooting League, I improved the most over the course of the last season.  I wasn't able to accept it on my own, so Jeff grabbed it for me.

Now before you get too excited about this honor, what it really means is that I was the worst shooter the year before.  It was my first year and I had a lot to learn.  For those of you that might not be familiar with trap shooting, here's a quick lesson...

In each round, you attempt to shoot 25 targets - which are bright orange clay disks that are launched from a single "house" or trap.  There are five positions in a semi-circle, where you attempt to shoot five targets before moving on to the next position.  The targets can be launched in any direction from the house - left, right, center, high, low - you never know where they will go.

In the course of the season, we attempt to shoot 600 targets.

OK, on my very first round, I shot a zero.  I didn't hit any of the 25 targets.  My second round, I shot a one.  So, the bottom line is that I could only improve from there.  I finished my first season with a total of 307/600.  I finished the second season with 418/600 - an improvement of 111.  I graciously accept this honor.

I really do enjoy the sport, and especially the comradery of being on a team with a bunch of great guys.  I miss being able to shoot this year.  I look forward to next year.

It was great being able to catch up with the guys, and more so, being able to enjoy a good meal with them.  Eating is once again something to look forward to.  I'm still not 100%, but close enough.

Unfortunately, my dry mouth has made it to my vocal chords, and I have lost my voice.  Hopefully, it will clear up in a few days and I'll be back to my old self again.  I did more listening to Smokey and Jeff, than talking.

Two years ago, I had built a really cool screen porch for Bill & Dianne.  They are friends of Smokey and his wife Kathy.  During our breakfast conversation, Smokey mentioned that Bill & Dianne were looking for someone to replace some windows at their place, and wondered if I would be interested.  

Windows are a project that I can handle, so we headed over to check out the project after breakfast.  I couldn't stay to take measurements, since I had my eye doctor appointment that morning, but I will get back over there to measure and get the windows on order.

Next stop Tuesday morning was the eye doctor appointment.  A couple of weeks ago, she found a laceration on my left cornea.  I was given eye drops to clear it up.  Part of the nerve damage that resulted from the cancer is a lack of feeling on the entire left side of my face.  This includes my eyeball itself.  She figured that the laceration may have happened while I was sleeping - I rubbed my eye against the pillow, or maybe my hand.  

The laceration has heeled, and my sight is getting better.  I had mentioned to Dr. Julie (eye doctor) that Dr. Akthar (Proton Radiation Oncologist) felt that the left eye may have been effected by the radiation resulting in the cloudy fluid in my eye.  This should clear itself up in time as the eye heals.  As a little aside note, I have to thank God that I have no feeling in my left eye.  If it is actually radiation burned like my throat and the skin on my neck, I can't imagine how painful it would be on my eyeball.  Thank you for that.

Dr. Julie insists on me using an eye moisturizer, since she feels that my left eye is unusually dry.  This didn't surprise me at all since everything else is also dry - my mouth, my sinuses, and my throat.  The brand she recommended has the consistency of Vaseline, which of course, makes a gooey film over my eye, making it impossible to see through.  So, I'm back to not seeing with my left eye.

No one knows if or when my neuro deficits will begin to repair themselves.  It could be a year or more before I notice any change, or it may not happen at all.  I need to consider that this is the best it might ever be, and begin to plan my future accordingly.

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.