Frustrated

 Frustrated.  If someone were to ask how I'm doing, that would be my answer.

I spoke to Mayo Clinic this morning to see if there is any update on my admission into their program.  The very nice oncology nurse went over the doctor's notes that they had on file.  I am now in the "appointment phase", which means that they want to do a face-to-face meeting with me.  But, they are waiting for the biopsy slides, and the imaging from the recent CT scans.  (They did receive the radiologist reports of the scans.)  "That usually takes one to two weeks to get all of that in our hands" she said.  One to two weeks?  I told her that I would be happy to pick up anything they need, drive it to Minnesota, and personally hand it to them.  One to two weeks?  We live in a world where you can get anything from anywhere in the world overnight.  

Another interesting factoid that I have found is that Medical Oncology is a completely separate department from Radiation Oncology.  This seems to be universal.  In my case, I would need both for my treatment.  The nice nurse said that she would try her best to get an appointment with each department on the same day, so as to avoid me making two nine hour round trips to Mayo.

Any one who works for a good company and has good health insurance should count their blessings.  If I had good insurance in the beginning of this, I could have taken the advice of a nurse practitioner friend of mine, Nancy, and got in my truck, and drove straight to Mayo in Rochester, MN.  Mayo would have run all of their own tests, and I would have been in treatment months ago.

Not having insurance in the beginning set me on a very slow trajectory of getting care.  "We will need a $2600 deposit before we can schedule the MRI".  "We will need a $250 deposit before we can run the lab tests." they would say.  It was July 7, 2020 when I had my first MRI that showed a tumor under my left eye.  It was January 4, 2021 when it was biopsied and found to be cancer.  In the mean time, the cancer spread to the entire left side of my head. 

The moral of the story is that, not having insurance is more than just the financial aspect of paying for care, it is also an obstacle in getting care.  I have been working and contributing to Social Security since I was 13 years old, in 1975.  I have never missed one year in 45 years of working.  Shouldn't that entitle me to some kind of affordable health care?  I have six more years before I can start Medicare.  OK, I'll get off of my soapbox.

Waiting to hear from the nice nurse at Mayo Clinic. 

Dr. Schreiber (the biopsy surgeon) is hell bent on figuring out how this started.  Squamous Cell Carcinoma is a common head and neck cancer, but it always starts somewhere on the skin, then penetrates to other tissues and nerves.  Dr. Schreiber sent a referral to Dermatology.

On Wednesday, I went to see a dermatologist.  Dr. Kumbier checked me out from head to toe and found no signs of prior cancers.  She did find some dark spots on the right cheek that looked pre-cancerous, so she blasted them with liquid nitrogen.  Then, there was that bump on my left temple.  It has been there for at least 15 years.  She asked if I wanted it removed.  "Sure, let's do it!" I replied.  "If I can keep people from staring at it, and occasionally asking what it is, I'd be a happy guy."  She said it looked like a cyst, but she would send it out for pathology to look at.

I wish I knew a way to speed up this process.  

All my eggs in one basket

I spoke with my good friends, Tony and Cindy, the other day.  They called me, which was a pleasant surprise.  Tony is a cancer survivor, and Cindy is still battling through hers.  Their words of wisdom, advice and love were just what I needed.

Tony is a "plant based diet" promoter, swearing that it is the reason for his success in fighting and beating cancer.  I get it.  I believe it.  But, dang, that is a stretch for me.  As a first step compromise, I am going to eat raw vegetables for lunch.  Maybe I can ease into it slowly.  

The truth is that this crazy cancer, that I have, has effected the nerves on the entire left side of my face. These include the nerves that control my left chewing muscles, left side of my mouth facial muscles, left side of my tongue, and half of my taste buds.  If I try to chew anything that is the least bit crunchy, I inadvertently bite the inside of my left cheek or the left side of my tongue.  That, in and of itself is not so much a problem, since I can't feel either anyway, it is the blood that runs out the left side of my mouth that causes my dinner guests to gasp and gesture that I wipe my mouth.  I'm good with avocados, and raw spinach, but nuts, celery, carrots and sweet potatoes are out of the question.

The bottom line is that eating is no longer something to look forward to, instead, something to dread.  Couple that with the lack of taste, and you end up with most everything tasting like cardboard.  Soup has been my staple of choice.  Kathie made a pot of chicken noodle soup, which featured lots of garlic, onions, celery, carrots and chicken.  When it was all said and done, all I could taste was the chicken and oregano.  Oh well, I can stand to lose about 25 lbs.

It was Tony's other bit of advice that really hit home.  The reality is that cancer is an unpredictable foe.  It makes it's own rules, and changes them at will.  It is bent on killing me, and will stop at nothing to see it through.  

Tony's advice - make peace with death.  In other words, take death out of the equation.  The most important thing that I can do is to stay positive, and keep fighting.  

The best analogy that I can come up with would be to picture the Kansas City Chiefs and Tampa Bay Buccaneers playing in the Super Bowl.  The only thing is that the stadium is completely surrounded by flood water, all the way to the upper deck.  Any minute, the flood waters could let loose and flood the entire stadium where they are playing.  They have a choice - they can worry about the flood waters and let that fear effect the way they play, or they can make peace with the pending danger and concentrate on playing the game.  

As a Christian, death no longer holds any power over me.  

Yesterday, I had my CT scans done in place of the PET scan.  Instead of doing one head to toe PET scan, they did three individual scans - knee to pelvis, pelvis to neck, and neck and head.  They used the same contrast and got the same results.  Maybe the PET scan was more expensive than the three CT scans.  Insurance companies, UGH!

The scans were sent off to Mayo Clinic for review.  I sure hope that I hear something soon.

Today, I met with Dr. Schreiber for a follow up of the biopsy surgery.  The surgical site, in my upper left sinus, has healed nicely.  It took longer for the pain in my nostril to heal.  He laughed and said that I would have been shocked to see how many instruments he had shoved up there at one time.  I wish he would have taken a picture!

I've been having a problem with my left ear since this all started.  The new scans showed more clearly the tumor that is causing the pain in my left ear.  I've also had liquid trapped in my left middle ear that has been driving me crazy.  Dr. Schreiber explained that there are muscles that open the eustachian tube that relieve the pressure and allow the liquid to drain.  These muscles are also atrophied by the nerve damage.  The remedy, good old fashion ear tubes, which he inserted in my left ear.  The ear tube will help with the pressure and liquid, but the nerve pain is cancer related. 

I emailed Dr. Schreiber a week ago, asking if there would be a plan B, in the event of Mayo deciding that I was not a good candidate for their proton therapy.  Plan B would mean Dr. Schreiber removing some of the tumors surgically.  One of the things that I have asked all of the doctors from the beginning is that they be straight with me and tell me the truth.  Dr. Schreiber studied the previous and new scans and determined that none of the tumors could be removed surgically.  Proton beam therapy is my only hope.

This means the proverbial, "Putting all my eggs in one basket".  None of the options that are available are good options.  They will remain on the back burner until they have to be considered.  Let's hope, and pray, that day doesn't come.

Hello, is anyone home?

Today is Saturday, and no word from Mayo Clinic.  I can see, by way of my "Patient Portal", that they have received my records, and are reviewing them.

I have to admit that I'm getting a little anxious.  There never seems to be a sense of urgency in this whole process.  "Hello!  I'm dying of cancer here.  Is anyone home?"  The pandemic hasn't helped either.  It was two weeks after my amazing team of doctors figured out how they would safely get a biopsy sample, before they could book an OR to do the procedure.  It seems like our hospitals have ground to a screeching halt.

I don't think that I told you about that, the biopsy surgery, that is.

By early December 2020, the cancer had spread throughout my 5th cranial nerve.  It was lit up like a Christmas tree on the MRI, showing white from the brain stem to the farthest reaches of the branches.  The top two cancer choices were Large Cell Type B Lymphoma, or the rare Squamous Cell Carcinoma.  Each having a completely different treatment plan.

Dr. Neal - Neuro Surgeon, was tasked with the challenge of getting the biopsy.  He studied the scans, looking at every possible angle, but couldn't see any safe way.  The largest mass was at the base of the skull in a place called Meckel's Cave, where the Trigeminal nerve (the 5th cranial nerve) branches off into it's three main branches.  He felt that opening Meckel's Cave was too dangerous.  

Dr. Neal called Dr. Urqhart - Head & Neck Oncology/Ear, Nose, and Throat, for advice.  I met with Dr. Urqhart the next day for a full exam.  While I was sitting there, Dr. Urqhart got on the phone with Dr. Schreiber - Head & Neck Oncology/Facial Reconstruction.  Dr. Schreiber reviewed the scan right then and there, and came up with a plan.  He would pull up my left upper lip, drill a hole into my sinus cavity, then into the bottom of the orbital socket to retrieve a sample.  

In the two weeks that I waited to have the procedure done, Dr. Schreiber came up with a better plan.  He would do the procedure arthroscopically through my left nostril, first cutting away the tissue directly under my left eye, then the bone, exposing the tumor.  He was able to get a good sized sample for pathology.  My nose is still sore from that procedure.

Somehow I ended up with the most amazing team of doctors that I could have ever hoped for.  Starting with Colleen Mueller, NP - my primary.  She has been the most amazing advocate, always looking out for me, and keeping on top of the process.  Then Dr. Anderson - Ophthalmology, Dr. Lawler - Neuro Consult, Drs Neal, Urqhart, and Schreiber.  Dr. Boyer - General Surgery, who installed my port, Dr. Yasar - Chemo Oncology, and Dr. Lee - Radiation Oncology.  Any of my Northwoods friends would do well to be in their care.

Since I didn't hear from Mayo today, I hope it will be Monday.

I spoke to my mom earlier today.  Other than the pain, she is doing very well - keeping up with her exercises, and giving my dad a hard time.  Thanks for all of your prayers and thoughts for my mom and me.

I'll let you know as soon as I know something.

Thinking outside of the box

The day before yesterday, my mom fell and broke her femur.  She and my dad are 88 years old and living out in Palm Springs, CA.  She simply got up, took a couple of steps, lost her balance, and fell.  She was taken to the hospital, where she underwent surgery.  A rod was implanted, along with various supporting hardware, and would you believe they had her putting weight on it that same day?  It's truly amazing!  Now, don't get me wrong, she has a few weeks of painful recovery ahead of her, and she can use all of your prayers for a speedy recovery, but, I'm still amazed at what has become normal in modern medicine.  If you're reading this, mom, I love you, and will call you later today.

I spoke to Dr. Lee's office on Tuesday about the insurance company denying the PET scan and how it might effect the referral to Mayo Clinic.  He agreed to submit the referral anyway, and get the ball rolling.  To my surprise, I received a phone call from Mayo Clinic Admissions Department yesterday.

Don't get too excited, it is just a preliminary review to see if I fit the criteria of what their program offers.  Dan, the extremely professional admissions person must have asked at least 30 questions (or so it seemed) regarding, what was wrong, what types of treatment I was willing to have, and what are my expectations.  If his responses to my answers are any indication as to my acceptance (He would say, "Excellent", "Very good", or "I love that" after every answer.), I might just have a chance to get in.

I was also given a patient I.D. number, which bids well for me, and transferred to the Oncology Department to talk with Lisa, a nurse in the department.

Lisa asked more clinical questions, such as, do I have a power injectable chemo port installed?  I do.  Am I willing to have Mayo's team re-evaluate everything, which would include all new testing and imaging?  That seems prudent to me.  Would I be interested in clinical trials? Absolutely.  She asked that if the team feels the best course of treatment is a multi-tiered approach (I.E. Surgery, Radiation, and Chemo), would I be in agreement.  Yes, I would.

Now please listen; I don't want any of you to think for a second that I am giving up hope, or my natural positive attitude is waning in the slightest.  I need you all to understand that I am approaching this in the same manner that I have approached every other issue in my life - realistically.  

The reality is that, barring divine intervention, and by that I mean a full blown miracle, I will most likely not recover from this, at least not 100%.  I will be left with some serious physical ailments and limitations.

With that said, my feeling is that I will hold nothing back.  If I can't benefit from this treatment, I want someone in the future to be able to benefit from it.

I've taught over 100 guys the art of troubleshooting problems on various machines.  "Don't focus on the obvious, look outside the box.", they must have heard me say 1000 times.  I want out-of-the-box thinkers on my team.  I want the guy that says, "Why don't we get with Ophthalmology, and have them remove and preserve the left eye?  That way, we can use radiation to kill the tumor, and have the eye re-inserted later."  That's the guy I want on my team!  If we're going to do this, let's not pussy-foot around.  

I was probably 11 or 12 years old when my brother Marty crashed on his dirt bike and broke his Tibia (lower leg bone).  They had him in a cast for, I don't know how many weeks, that went from his toes to his hip.  I remember that his recovery was long and painful.  More so, it seemed forever before he was back on the soccer field, kicking the ball again.

Today, my mom is recovering from a break that is as, if not more, serious than Marty's break 47 years ago.  At some point in time between now and then, some doctor said to his colleagues, "Why don't we insert a titanium rod down the center of the bone to stabilize it while it heals, so that we can get the patient into rehab sooner?"  That one simple question started the process of years of developing different materials and techniques that made my mom's surgery the norm today.

How awesome would it be if one of my doctors took a calculated risk that may not benefit me, but could benefit my grandkids, or great-grandkids?  Isn't that just as important as personal gain?  

Dan and Lisa said that I should hear back from Mayo Clinic by the end of this week.  

Will my insurance company approve it?  We'll see...

Another enemy?

There is one thing that I can't say enough about, and that is how nice, caring, and professional the staff at Marshfield Clinics truly is.  They all seem to really enjoy what they are doing, and enjoy where they work.  That means a lot to me.

I began the day a little apprehensive - OK, maybe a little scared.  The weight of what's ahead is beginning to bare down on me.  The nursing staff sensed that, and spent as much time as I needed to answer questions, and get my head in the game.

This is going to tough.  Probably the hardest thing that I have ever done in my life.  

I had a pretty adventurous childhood.  Growing up in southern California, I spent most of those early years camping in the desert, with my family, in our blue and white Shasta trailer.  You know the kind with the silver wings on the back?  

My brothers and I would hike for miles, always looking for the next adventure.  Although sometimes, adventure would find us.  On one particular hike, I became preoccupied by an Ocotillo cactus skeleton that I had found along the way.  It was maybe two feet long, hollow in the middle, and as straight as can be.  In my six year old imaginative mind, it was a spy glass that a pirate captain would use to see what was on the horizon.  The problem with looking towards the horizon is that you can't see what is right in front of you, and what was right in front of me?  A Cholla cactus.

The Cholla cactus is probably worth Googling.  This one in particular was about 36" tall, and made up of hundreds of baseball sized, interconnecting, balls covered with 2" needles.  It is also known as the "jumping cactus", since you would swear that if you were closer than a foot away, it would jump at you and stick you.

I tripped on, and fell face first right on top of a Cholla.  The pain was unimaginable.  Marty picked me up and gently rolled me over on my back.  I was covered with dozens of balls, from my chest to my toes.  I remember looking up at Marty, as he cradled my head.  Instantly, he yelled to Jim, "Go get Dad!"   

The next thing I remember was my dad looking over me, holding a pair of channel-lock plyers, and him saying, "This is going to hurt me more than it is going to hurt you."  

My first appointment yesterday was with Dr. Lee, my Radiation Oncologist.  We reviewed the scans, and talked at length about the process.  He needed to make sure that I understood the risks involved in targeted radiation therapy.  It is not exact.  There is a field of penetration around the targeted area that is susceptible to damage.  Most of the time it is muscle tissue and bone structure that will heal in time.  In my case, there are two areas that has caused him to pause.

The first is the tumor under my left eye.  It is way too close to the eye to attempt targeted X-Ray treatment.  The radiation would definitely destroy my eye, rendering me blind in my left eye.  The other is the tumor where the Maxillary nerve follows closely to the base of the skull.  The brain is only separated by a thin piece of bone which risks brain injury, known as radiation encephalopathy.  This could cause a variety of neuro issues including stroke. 

Dr. Lee is recommending a referral to have Proton Therapy.  Proton therapy is a more exact radiation treatment that more precisely places the radiation dose where it needs to be.

The two closest facilities that offer it are Mayo Clinic in Rochester, MN or Northwestern Cancer Center in Warrenville, IL.  

I asked if I should go ahead with the chemo port insertion.  He said that no matter what happens, I will be poked and prodded so many times in the next few months that having the port will be a lifesaver.

While waiting for the port insertion surgery, I decided to fill out an advanced directive form.  This simply states, on the record, who they can talk to about my condition, and who can make decisions for me if I am incapacitated.  The issue came up two weeks ago when I had my biopsy surgery.  My daughter, Jessica, called the hospital to ask how I was doing, and they couldn't tell her anything.  It is a good idea to have this form filled out before something happens.  I would suggest that all of you, on your next visit to your primary physician, fill out this form.  At least it will be there if you need it.

An emergency surgery came up so I was bumped about an hour.  Not a big deal.  I made a phone call to a friend, Cindy.  Cindy and her husband Tony have both had cancer.  Tony is 100% cancer free now, and Cindy is still working through hers.  I told her about the proton therapy referral.  She always gives good advice.

Any of you that have been around me may have heard me say from time to time, "I had a Joe moment."  Joe moments are the times that I find humor in a moment even when, often times, no one else does.  While getting ready for my port insertion surgery, Dr. Boyer was checking me out to find the best location.  I told her that if all goes well, I plan on being trap shooting again by May, so placing the port on the left would be best for me.  She normally puts it on the right, but was willing to see what she could do.  With gloved hand she began examining my chest, massaging my pectoral muscles.  She said, "Wow, you have very large pecs" as she continued to feel around.  I looked up at her and said, "Doc, you're kinda turning me on."  She blushed, scoffed, and said, "I'll see you in the OR."  

The port insertion went well.  It is interesting that it is completely under my skin.  I thought there would be a plastic cap sticking out.  This reduces the risk of infection.

While sitting in recovery, I answered my phone to find the radiology department calling.  As it turns out, the insurance company has denied the PET scan that I am supposed to have.  How can that be?  Dr. Lee was waiting for those results so that he could make his case for referral to proton therapy.  They will allow a series of CT scans, using the same sugar contrast, but not a PET?  This is ridiculous.  I asked if they would do it in the same appointment time.  No.  The CT's will take longer so now I am pushed back another week.

Little did I know that I would be fighting two enemies - the cancer and the insurance company.

Last week

In this past week, I met with Dr. Yasar - my Medical Oncologist.  It is kinda surreal to think that when I say, "my Oncologist", that means that I have cancer.

This is a very real concept to grasp.  At a bare minimum, I will be fighting this thing for a while.  This is a battle to the death - one of us is going to die in the end.  I will be surrounded by people that will be there to help me in this fight,  They will hand me weapons and give me battle strategies, but, in the end, I have to fight this by myself.  

My family and friends of faith are saying, "The Lord will be with you through this entire fight."  I believe He will.  I believe that this is all a part of His plan for me.  But, we never know His plan.

I sat down with Dr. Yasar, where we discussed what will happen first, what will the treatment look like, and what is the long term prognosis.

Squamous Cell Carcinoma (SCC) responds very well to radiation, so the treatment will be Targeted Radiation therapy.  She explained that I will be given a chemo port in my chest where I will receive three rounds of chemo, spaced 21 days apart.  At the same time, I will receive radiation therapy every day for 90 days.

She explained that the chemo cocktail I will receive is designed to enhance the effects of the radiation.  It is not the same cocktail as the one given for chemo only patients.  I may not lose my hair, which is the least of my concerns.

She said, "Let's talk about expectations."  "Agreed", I said, "Under one condition - that you tell it to me straight and don't sugar cote anything."  She agreed.

She asked what I expect to happen after treatment.  "I expect to be back to 100%, completely cancer free."  I replied sarcastically.  "That's not going to happen" She said.  So, we talked realistically.

She feels confident that they can kill and eradicate most, if not all, of the cancer.  I wasn't expecting that.  That sounds like a win to me.  Then she said, but.

Is that not one of the most dreaded words in the English language?  "Oh, you are such a wonderful guy, but..."  "You have been a tremendous asset to the company, but..."  I can't remember a single time when something good followed, but.

My nerves have been damaged, and most likely won't heal in my lifetime.  Worst, she hasn't seen this much nerve damage in a single patient.  It is not looking good.  It will take a miracle.  Your prayers will be needed.

Still trying to understand this whole process...

Dr. Yasar handles the chemo side of this treatment, while at the same time, another Oncologist - Dr. Lee handles the radiation side of it.  I will meet Dr. Lee tomorrow.

Next week will be a busy one.  I meet with Dr. Lee at 8am Monday.  Then at 10:15am I will have the chemo port inserted.  Tuesday afternoon I will have a PET scan.  Hopefully, by the end of the week, I will begin treatment.

Now, we are caught up to real time.  Watch for new posts as things develop.  Thank you in advance for all of your thoughts and prayers.

The Beginning - Part 2

I'm a professional procrastinator, I admit it.  Through my entire life, I've had to force myself to do things that I would much rather put off.

I woke up the next morning thinking of every excuse, that I could come up with, for not going to the doctor.  "They're not going to find anything", "It will be a waste of time and money", "How am I going to pay for this anyway?"

But, that still small voice inside my head kept telling me to go.

I showed up at the clinic, 20 minutes early as requested.  I went through the battery of Covid questions, answering "no" to all of them.  I had my temperature taken by the woman who was obviously exhausted by asking the same series of questions countless times that day.  She held the gun to my head and pulled the trigger.  98.5, she wrote on the sticker and stuck it to my chest.  The look on her face made me wonder if she was dreaming about the time when someone might answer "yes" to just one of her questions, breaking the endless cycle of "no's".

I was directed to waiting area 1B, where I sat patiently waiting to hear my name.  "Joseph?"  I was greeted by a very lovely young nurse named Tyran, who escorted me to an exam room and asked me to describe the problem I am having.  

Where would I start?  I hadn't thought about how to put into words the crazy stuff that was going on.  I began with, "Well, if I didn't know better - and I'm not convinced that I do - I would swear that I have a growing colony of worms crawling in my left lower eyelid and left upper lip."  She typed that into her laptop, as if she had heard it 100 times before.  "Oh, yes" I added, "there is also pressure under my left eye."

She asked the usual questions of when it first started, did it coincide with any other issues, and how do I feel otherwise?

She took my vitals and said Colleen would be in shortly.

With a knock on the door, Colleen came in and introduced herself.  Colleen is also a Nurse Practitioner, which prompted me to ask, "What do I call you?"  (We call doctors, Doctor, and nurses, Nurse) She said that I should call her Colleen.  

"So, you have worms?", she asked with a huge amount of sarcasm.  "Not the intestinal variety" I began my reply, "at least that I know of, but more the kind that, maybe a fly plants under your skin while the larvae grow to adulthood, then they hatch and fly away."  So, you have maggots?" she retorted.  "You're going to get some mileage out of this one, aren't you?"  I asked.  "After the day I've had, you bet I am." she replied.

I began again, "Listen, I don't normally go to a doctor, and by that I mean, I don't ever go to the doctor.  So, for me to be here means that this is going to be something really crazy that you may have never seen before."  "Like worms?" she asked.  "I've seen worms before."

Putting all humor aside, with a serious tone she asked, "Tell me the whole story, from the beginning." 

I told her of the bump on my cheek and the upper respiratory issue, both of which disappeared just before these symptoms started.  I gave her every bit of information that I could, that pertained to this issue - at least enough to get started.

She ordered some tests, and sent me on my way.  Little did I know that, behind the scenes, Colleen was calling other doctors, and trying to get ahead of the problem.  She has been an amazing advocate for me.

I reached out to my older brother, Marty - PhD Neuro Biochemist.  Between the two of us, we researched the symptoms to the hilt.  Everything pointed towards something putting pressure on the Infraorbital Nerve, under the left eye.  Colleen ordered an MRI, and just as predicted, the MRI showed something there.

I was referred to a neuro surgeon for a consult.  He agreed with our diagnosis, but the question still remained, "What is it?"  

Cancer was not at the top of the list.  He suspected nerve damage from a prior infection, or possibly a localized schwannoma.  Since the lack of insurance was still looming in my mind, I agreed when he suggested a 90 day, wait-and-see approach.

That may very well have been a huge mistake on my part.

Nothing changed in the first 30 days.  Between days 31 and 45, some sensory was beginning to return, which I mistakenly took for a good sign.  Between days 46 and 60, I developed what could have been an ear infection in my left ear.  I saw Colleen who checked my ear, nose and throat.  All looked clear.  She prescribed an antibiotic just to be sure.  

That's when things took a turn for the worst.  Between days 61 and 75, I began to have sensory issues on the entire left side of my face.  I researched the symptoms.  Something was moving and growing fast.  So many nerves were involved. Colleen ordered another MRI.  

The MRI showed just as we had expected.  All three branches of the Trigeminal nerve were now involved, along with the Facial nerve.  The Facial nerve travels through the Auditory Canal, through the middle ear, and on to the face - hence, the ear ache.

I was sent to Marshfield Medical Center for a biopsy.   The biopsy came back Squamous Cell Carcinoma.

The Beginning - Part 1

Never in my wildest dreams would I have ever thought that I would find myself knowing this much about nerves and cranial anatomy, much less, be able to correctly pronounce them.  Terms like Ganglion, Foramen Rotundum, Middle Cranial Fossa, and Pterygopalatine Fissure and Fossa, along with bone structures of the skull such as the Zygomatic, Maxillary, Sphenoid, Temporal, and Mandible.

It's important for me to understand how it all works.  I believe an informed patient will make the doctor even better.  (I'm not sure that my doctors would agree.)

Those of you that know me as the one who may have taught you the art of troubleshooting a problem on a system or machine won't be a bit surprised that I approached this problem in the same manner.  As soon as the first symptoms began, I was on the internet researching, looking for the right "schematics" as I've done thousands of times in the past.  I took mental and written notes of every little detail to narrow down the cause of this issue.

I knew there was something wrong - something that was not going to go away on it's own.  This was going to be a journey.

Part of the reason for writing this blog is to help others by teaching them to (1) pay close attention to simple irregularities that may happen on your bodies - they could be the beginnings of something bigger, (2) don't procrastinate - when you see something unusual, get it checked out, and (3) stay on top of it - do your homework, learn about the issue, and stay informed.  

I've only known that I've had cancer for a week now, although this journey has been going on for over a year.  

My official diagnosis is; Squamous Cell Carcinoma tumor spread along the 5th and 7th cranial nerves.

Squamous Cell Carcinoma is typically one of the skin cancers.  Although, it is commonly found in head and neck cancers as well.  When found internally, it most likely started as an external cancer that infiltrated internally and, in my case, attached itself to a nerve and kept growing.  It could have began as skin cancer, or throat cancer, or maybe even cancer in the sinus cavity.  

This is where the story begins.

For at least the entire calendar year of 2019, I had a bump on my left cheek, just below my left lower eyelid.  I could feel it there, but it didn't hurt.  Mostly, it was about the size of a dime and pretty flat.  Most people never even noticed it, or at least never mentioned it.  That was until the Fall of 2019.  In the Fall, it started to grow and change.  I had at least four close friends that noticed it enough to bring it up and tell me that I should get it checked out.

Of course I did not get it checked out.  Going to the doctor has never been a huge priority for me.  The last time I had been to see a doctor was August 2014 for a complete physical, where nothing unusual was found.  I was the picture of health.

The bump vanished, for all practical purposes, in or around December 2019.  

Beginning the day after Christmas, December 26th, Kathie and I had the most horrible upper respiratory infection of our lives.  This lasted all through January 2020, and finally was over by mid-February 2020.  Could it have been Covid-19?  I'm sure it could have, but we will never know.

Around March 2020, I began having some crazy sensory feelings in my left lower eyelid and in my left sinus.  

One of the things that you need to understand, that went into my decision making, was the fact that I had no health insurance at the time.  If I had, I may have been more open to seeking professional help.  Not having insurance made the decision not to, even easier.  My gut feeling told me that something was wrong.

I got on the internet and began searching for affordable healthcare.  I quickly found that there is no affordable healthcare when you are outside of the Fall open enrollment period.  The best I could find was $388/month with a $12,500 deductible, and a $30,000 annual out of pocket maximum.  That's not insurance, that's robbery.

I called Oneida County Health Department, asking if there is a free clinic around, that I may be able to speak to a doctor.  No such thing exists up here, but they would referred me to Marshfield Clinic's Nurses Help line.  The help line is a group of Nurse Practitioners that are allowed to diagnose certain conditions, over the phone, and prescribe antibiotics and such.

For a mere $40 fee, the NP felt the symptoms had the basic signs of a sinus infection.  I was good with that diagnosis.  Basic troubleshooting 101 says eliminate the easy stuff.  The prescription, on the other hand, nearly had me drop to my knees in tears.  $158 for Clavimox?  The pharmacy tech pulled out her start phone, and in one minutes time, had me signed up on the GoodRx app.  She said, "That will be $8, please".  There's a tip for any of you that may not have prescription insurance along with your medical. 

I did a seven day round of antibiotics, but nothing changed for the better - in fact it was getting worse.  By this time, the crazy sensory feelings had me believing that I had worms crawling and multiplying in my lower left eyelid and my upper left lip.  It was nonstop.  I couldn't sleep with them crawling around.  I also began feeling pressure under my left eye, that was starting to give me a headache.

I called the Nurse's Help line again.  She suggested that I make an appointment to see a doctor.  I began to bock at the idea, but she was not letting me off the hook.  She said, "Oh, Colleen Mueller is taking new patients.  OK, I have you set up for 1:30 tomorrow afternoon in Minocqua.  Show up 20 minutes early.  Good bye."

I'll never know who that Nurse Practitioner was.  She knew that I would have put it off, and she wouldn't let me.  She is one of many that saved my life.

To be continued...