Bad news, good news, bad news, bad news

I have some bad news, I have some good news, then some more bad news, followed by more bad news.  Let me explain.

The insurance company paid for all of the preliminary testing and consultations at Northwestern, this past Monday and Tuesday.  Things were looking good.

Then, the Medical Director at the insurance company decided to, unilaterally, deny the treatment at Northwestern, saying that there is no evidence that proton therapy is any better than gamma ray radiation therapy.  He is sticking to his guns on that, even after two appeals.  So, that's the first bad news.

The good news is actually amazingly great news.  Northwestern Chicago Proton Center has reviewed my case, and decided to wave all costs for my treatment!  Proton Beam Radiation Therapy has been around for years, but is still seen as experimental by insurance companies.  They feel that my case, being as rare and unique as it is, is the perfect example of what proton beam is designed to do.  With all of the imaging from my CT Simulation, they will simulate two models - one using gamma ray, and the other using proton beam.  I will be a case study for the future of the program.  And yes, it will be in writing as a legal contract.  

The objective is "cure".  They assured me that (1) cure is within their reasonable expectations, and (2) they will pour into it every resource they have to ensure a cure, because it is just as important to them as it is to me.  That is just amazing.  Thank you all for your prayers - that's a God thing.

OK, now for the second bad news.  At the risk of repeating myself, remember me saying that Medical Oncology is completely separate from Radiation Oncology.  Medical Oncology handles the chemo portion of the treatment.  When Medical found out that Radiation got a waver, they went to the board and asked for a waver as well.  The board said, "The reason we gave radiation the waver is because the insurance company wouldn't pay for the treatment because it is not available in their network.  The insurance company will pay for chemo because it is available in their network.  So, no, you don't get a waver.  Tell the patient to get chemo in Wisconsin, and radiation here."  Medical Oncology is still going to bat for me, and they said that the board is willing to hear good reasons for why they would make an exception.  There is also a possibility of grant money to pay for it.  So, it's not a done deal yet.

Logistically, it would be almost physically impossible to get chemo in Wisconsin, and radiation in Illinois.  The closest hospital in the network is still four and a half hours away.  If it could be scheduled perfectly, maybe it could work, but that would mean a lot of driving for me with the physical effects of chemo in my veins. 

We'll keep working on that.

The third bad news.  Part of the reason for writing this blog is to keep everyone informed as to what is going on.  I know that there are a lot of you that worry for me, and I appreciate that, but the truth is that I have cancer.  Not only do I have cancer, but I have a rare, fast growing cancer.  And, again, not only that, but it is tracking along my cranial nerves.  I can tell you exactly where it is by the symptoms that I am experiencing.  It's bad, and it's getting worse.  I don't see the point in telling the story if I don't tell the whole story.

My latest symptom is that my left eye is no longer tracking with my right eye.  In other words, I go cross eyed when I try to look with both eyes.  Dr. Akthar is reviewing the latest MRI to see if he can find for sure what is causing it, but we can pretty much assume that the tumor has now reached my sixth cranial nerve that controls the muscles of the eye.  It's kinda crazy since I have 20/20 vision in both eyes.  I see perfectly, just not with both eyes at the same time.  It's not all that debilitating.  There are plenty of people out there that only have one eye, but it does take some getting used to.  As a word of warning for all my Northwoods friends, if you see me in my truck, I am driving with one eye closed!  Steer clear!

I was born with a pretty bad astigmatism in my right eye.  It measured 20/400 on an eye chart, so I always relied on my left eye to see.  That made me left eye dominant, even though I am right handed.  Through the magic of Lasik Eye Surgery, my vision was corrected to 20/20 in both eyes.  But still, my left eye remained dominant.  This makes it particularly challenging when trap shooting, since your dominant eye should be looking down the barrel, and you should have both eyes open to see a wider range.

I can drive perfectly fine seeing with my left eye, while my right eye is closed.  Honestly, it's like it's always been.  But wow, trying to drive with my left eye closed is down right scary.  I don't know what I would do if I lost my left eye.  So, please pray for that.

My medical oncology team up here is trying to put together a plan B scenario, just in case we have to do chemo in the Marshfield network.  That would not be ideal, so let's pray that some grant money comes through.  That's my best hope.

Radiation hasn't set a start date yet, but last word was that they were hoping for March 8th.  The chemo side will have to be straightened out before it can begin.  

I want to thank Craig & Theresa for their generosity in allowing me to stay at there house for the first couple of weeks.  That is a huge blessing.  Tony & Cindy have offered for me to stay with them, after that.  The plan is coming together.

I'll keep you posted as new things develop. 

Day two at Northwestern

I was up early, showered and shaved by 6:30 p.m.  I was surprised to find Tony & Cindy already up.  I was treated to a plant-based breakfast bowl and a cup of tea.  Tony is a cancer survivor, being given a cancer-free status last year.  Cindy is still battling hers, but doing well and looking healthy.  They have both adopted a plant-based diet, attributing it to their success in cancer recovery.  I get it.  I understand its benefits.  I think that I can embrace it in part, but having an occasional Spicy Deluxe Chicken sandwich will have to work into the program.

I was asked to report to the Northwestern Cancer Center at 8:45 a.m. to fill out some paperwork before my meeting with Dr. Ferris - Medical Oncology.  I was late.  I thought I knew exactly where the building was located, but it turned out that it was on the other side of the expressway.  I arrived at 9:00 a.m.  Lucky for me, the paperwork was the same that I had filled out the day before at the medical clinic where I had the MRI.

I filled out the paperwork in less than two minutes.  A nurse from Dr. Ferris office came to get me as I was handing in the clipboard.  Perfect timing.   

Medical Oncology handles the chemo part of treatment.  Dr. Ferris laid out her plan for chemo treatment.  I will receive a chemo dose once a week for seven weeks.  Seven smaller doses will be easier for me to handle with less side effects.  She is concerned about my tinnitus (ringing in my ears), since it is one of the main side effects of chemo.  Chemo could make it worse, possibly permanently. 

I finished up with Dr. Ferris and walked next door to the Northwestern Chicago Proton Center.

Another check-in process with the same paperwork, only this time, they took my picture for my new photo I.D. badge.  It's the "back stage pass" to the Proton Center.  You scan it when you arrive, and then at different locations around the building.  They need to make sure that they know where you are and that no one is wandering around the building.

First stop was CT Simulation.  This time, I was allowed to keep my pants and boots on, although I was asked to remove my signature black turtleneck.  Next, I was escorted to the CT lab.  The techs gave me a quick rundown on the process.  First, I am fitted with the mask, then they take a detailed CT of my head and neck while the mask is holding me perfectly still to the table.

The mask is a tight weaved plastic that is heated in an oven.  This particular style clamps under the head portion of the table.  The tech quickly applied it over my face, clamped it underneath, and began pressing it all around my head and neck to make a tight-fitting mask.  I had to lay perfectly still for ten minutes until the mask completely hardened.

The Eagle Scout in me had to ask myself the "be prepared" question... "Is there some kind of quick release on this mask, in the event that the room catches on fire, or some other type of disaster?"  I reached behind my head and felt the clamps.  I think I could get myself out if I needed to.  Let's hope I don't have to prove it.

The techs asked if I was comfortable, and ready to get started.  I'm as ready as I will ever be.  They set up the machine and left the room to monitor from the control room.  Realizing that I had my smartphone clipped to my belt, I snapped a selfie of me laying there with my cool new mask, before they started.  

This CT simulation is the first step in the planning sessions that lead to my proton radiation therapy.  Taken with the same mask that I will be wearing during proton therapy, the computer maps out the exact position of my bones, organs, blood vessels and soft tissues which include tumors.  The head and neck MRI's that I am having done will be spliced in to give my Radiation Oncologist an accurate picture of the cancer and it's location.  MRI's are better at imaging soft tissue which makes the tumors more visible.

The actual CT Sim took about an hour.  That was a pretty long time to be laying there unable to scratch the itch on my forehead.  Luckily, the actual radiation sessions only take about twenty minutes each.  I will be receiving radiation therapy everyday, Monday through Friday, for seven weeks.

Dr. Akthar - my Radiation Oncologist - came in to say hi when the CT Sim was finished.  We are right on track to get started in a couple of weeks.

Next stop is back to the medical clinic for my head MRI.  Same routine, scrub pants and a tee shirt, then off to the MRI lab.  This particular MRI lab is kept pretty chilly. I would guess about 55-60 deg.  After laying me on the table, they covered me with warm blankets, stuck plugs in my ears, and packed foam wedges around my head to keep it immobilized.

You may remember me saying that the neck MRI that I had yesterday took about forty-five minutes.  I suppose that it really didn't dawn on me that these are very high resolution images, unlike the ones I had before.  

The machine started, in the usual fashion, and I was left to the thoughts in my head. 

At first, the warm blankets gave me just the right amount of comfort that I fell asleep.   No telling how long I was out, since the only thing I could see was the blue plastic dot above my head that marked the center of the machine.  My guess, only a couple minutes.

I laid there as the machine went through its cycles of different tones, until finally, it stopped.  The techs came in and administered the contrast.  I asked how much longer.  They said about thirty more minutes.  Thirty minutes!  How long was that first session?  Fifty five minutes.  Now I am starting to understand why they didn't want to do it all in one session.  Not feeling so macho now, are you Joe?

About ten minutes into the scan, I became acutely aware that the foam block that was holding the left lower side of my head in position was starting to cut off the circulation in my ear.  It became more and more excruciating by the minute.  I began thinking to myself that I can't move or I will screw up the scan.  If I squeeze the panic ball this far into the game, they might have to start over.  I had to gut it out.

I've always had a high pain tolerance.  A couple of times, I had smashed and broken a finger early in the morning, and still finished the job before I went to the hospital.  Pain is not the problem.  My biggest concern, loss of bladder control.  There it is, I said it, know you know.  Maybe you didn't want to know that.  Sorry, now you do.  I don't think it is that uncommon for a guy my age.  One minute you're feeling fine, the next minute, you gotta go.  Too much information?

Now I'm laying there, concentrating on two issues - my bladder and the pain in my ear.  I've never been a multi-tasker so it was a no-brainer to err on the side of caution and devote my attention to the former.  Worst case, if I wet my pants, I'm wearing their scrubs.  With every change in tone of the machine, I prayed that it would be the last.  Then, finally, the machine stopped.  The techs came in and removed the head restraints.  I shot up from the table, exited the room to find a bathroom right across the hall.  

All in all, the head MRI took an hour and a half.  I hope I never have to do that again.

That was the last appointment.  I was finished and out the door at 3:30 p.m.  With a six hour drive ahead of me, I should be home in time for the evening news.  It's been a busy couple of days, but I am so glad that things are starting to move in the right direction.

On my way to Northwestern Cancer Center

I lit out of Minocqua at 7:00 a.m. Monday morning, enroute to my first appointment at Northwestern Cancer Center in Warrenville, IL.  We live 18 miles west of town, off WI70, on Bo DI Lac Dr.  I was told by a couple of older tribal gentleman that "Bo Di Lac" means "by the lake" in the Chippewa language.  There are so many lakes around here (earning this region the title, "Land of Lakes") that any street could be called "by the lake".

After twenty fire minutes heading east, I made a right turn to head south on US51.  My Southern Illinois family and friends might be interested to know that this US51, which is the main street of Minocqua, WI is the same US51 that is the main street of both Du Quoin, IL and Carbondale, IL.  

About 620 miles apart, that could make for an interesting, but very long trip.  I can imagine in it's hay day, heading south, you would come across small town after small town. Signs pointing towards their local attractions, and mom & pop shops with anything you might need, including souvenirs.  Best of all, small town diners and cafes serving fresh, home style meals.

We took a trip like that, when I was 8 years old in 1970.  My Grandma & Grandpa McLeish were celebrating their 50th wedding anniversary, back in Clinton, IN.  My Dad, Mom, and all five of us kids piled into the 1967 Ford F100, and took off from Poway, CA on a cross-country trip.  I was prone to motion sickness, so I got to drive up front with dad and mom.  The others rode in the back, under the cap, on a twin size mattress.  For me, it was the greatest adventure of my young life.  

It seems that Covid-19 may have re-kindled that spirit in the American dream.  I know that up here, there is not a single cabin on the market.  People from Minneapolis, Milwaukee, and Chicago bought up every one available as a way to escape from the lock-down.  Camper and travel trailer sales are booming.  Maybe this is what we need to save the small town American economy.

It took 6 hours to reach Warrenville.  The 2:00 p.m. appointment didn't give me enough time to grab lunch first, so I drove around for a little while, just to kill time.  

Today's appointment was an MRI.  I checked in at the center and was ushered back to the waiting area.  A nurse handed me a pair of scrub pants and pointed me towards the changing room.  "Keep your tee shirt on, but everything else off".  

The plan was to have a high resolution MRI of my head and neck.  Today would only be my neck.  I told the tech that I've had head and neck MRI's in the past, and asked why not do them both at the same time.  He said it would be too much time to be in for one scan.  In my macho mind I'm thinking, "Come on, I can handle it, I sleep through most of them anyway."

The neck scan took about 45 minutes.  It was long and boring, but manageable.  Little did I know what I had instore for the head scan the following day.

After the appointment, my stomach was pointing me to the nearest Chick-Fil-A.  My affection to this particular establishment has nothing to do with anything you may have read in the news.  I just like the Spicy Deluxe Chicken sandwich.  So, within minutes, my craving was satisfied.  I can't get them up North, so I get them when I can.

Tony and Cindy graciously offered to put me up for the night.  I can't thank them enough.

Tuesday will be a busy day.  First appointment is at 9:00 a.m.  I better get a good night's sleep.

The Dentist

I forgot to tell you about the dentist.

As it turns out, there is a twofold reason for why cancer patients are required by their oncologist to see a dentist.  First, to make sure that there are no oral infections that could compromise the, chemo weakened, immune system.  Secondly, to make sure that any necessary dental work is taken care of before treatment.  Radiation tends to temporarily weaken bone structure, so you don't want them drilling and yanking on your teeth too soon after treatment.  

In my case, the radiation will be directed in very close proximity to the bones of the maxilla (upper teeth) and mandible (lower teeth).  I can see why they insisted on me seeing a dentist.

So, how did I do?  X number of years of not seeing a dentist.  Forty five years of mostly brushing with just water.  Brushing with baking soda 2-3 times a week.  Huh?

They found one little cavity.

I couldn't believe it.  It must be a conspiracy.  Could this be a racket that dentists have capitalized on?  They know this cancer patient is desperate to have treatment, and they can't have treatment until the dentist signs off on it.  "You have a cavity that needs to be filled", the dentist says.  "Where is it located?", you reply.  "Oh, it is under your gum, on your back, right molar.  Only I can see it with my special instruments."

That is actually the jist of what he said.  One cavity, under the gum, right rear molar.  He showed me on the X-ray.  But then again, he could have showed me the area in question on the X-ray, and said I had a baby elephant growing under my gum.  All I saw was a shadow.  He said it was a cavity, so I had to trust him.

Thirty minutes in the chair later, I was drilled and filled.

I had to promise to come back and get a deep cleaning after treatment is finished.  I suppose the last deep cleaning I had lasted multiple decades, so this one could last the rest of my life.  I'm a terrible patient...  

I shouldn't be surprised that dental technology has improved over the past few decades.  The filling material he used was a silica based, light cured, resin material.  It is designed to match the color of the tooth.  I asked if they still use the old mercury amalgam fillings.  He said they are still available, and do have some uses, but for regular cavities, they use the new stuff.  

The dentist signed off on my treatment release, so I am good to go for Monday and Tuesday at Northwestern.  I will be leaving Minocqua at about 7:00am, to head south to Warrenville.  Normally, it is a five and a half hour drive.  My first appointment is at 2:00pm, so I should be able to get there in plenty of time.  Maybe even enough time to grab a Spicy Deluxe Chicken sandwich at Chick-fil-A!  I haven't had one in two years.  If you've never tried one, you should.  So good!

Very good news

 A lot has been happening in the last few days.  Kathie is home recovering from her knee replacement surgery.  Jamie and I are doing our best to help her when she needs help.  Otherwise, she insists on doing it all herself... which is typical of Kathie.  Our daughter, Jessica, is possibly coming to help on Monday and Tuesday.  That will be a huge help.  We went to Physical Therapy yesterday, and learned all kinds of new stretching and strengthening exercises for her to do at home.  The PT said that she is doing well with her range of motion, and is right on track for recovery.

As for me, my health insurance company has given the green light to go to  Northwestern Chicago Proton Center, in Warrenville, IL.  That is very good news!  From the moment I contacted them, Northwestern has been right on top of everything, beginning with assigning me a Nurse Navigator - Jennifer - to keep everything organized and moving forward.

I will be traveling there for one appointment on Monday, and three on Tuesday.  

Monday's appointment is at 2:00pm for another MRI of my head and neck.  The last one I had was in November, so they need to see how much it has progressed since then.  

Tuesday, I will meet the Medical Oncology team, at 9:00am.  Medical Oncology handles the Chemo side of treatment.  We will review the new MRI, and talk about treatment.  

At 11:00am, I will meet with the Radiation Oncology team.  I'm sure that it will be more of the same - telling me more about the process, and talking about treatment.

Lastly, at 2:00pm, I will have my CT Simulation.  From what I know so far, I will be fitted with a custom mask, then laid on a table where the CT machine maps out the cancer.

I am very curious about the mask.  My understanding is that it looks like a net, that when warmed, becomes pliable.  They shape this mask around my head, neck, and shoulders, then it is "bolted" to the table.  It is meant to keep me absolutely still while the protons are shot into my head.  

I am not the least bit claustrophobic, so the thought of having this mask restraining me doesn't bother me a bit.  I've made a living, over the last few years, of crawling around in crawl spaces.  There is one in particular that I will never forget.  

When we moved to Southern Illinois, I established my business, "Reliable Handyman Services".  I made flyers and hung them up in all of the local restaurants and shops around town.  My first customer was an old farmer named Clarence.  Clarence lived in the family farm house that his great-grandfather had built in 1901.  He sat on nearly 100 acres, that he leased to a huge co-op farmer.  Anyhow, Clarence complained that he wasn't getting any heat in his house, and the furnace was running constantly.  As it turned out, all of the duct work under the house had rusted and fallen apart.

He called a couple of local HVAC guys that came out, took one look at the 16" x 16" crawl space opening and high tailed it out of there.

Desperate to get my business going, I took the job.  Now, getting through the crawl space opening was the easy part, having to shovel a trench throughout his crawl space was a different story.  I could see where water had been running off of his fields, for decades, right under the house.  The silt had built up to the bottom of the heat ducts, causing them to rust.  There were places that I had to exhale in order to get under the floor joist.  This is where I was introduced to "camel crickets" (Otherwise referred to as "cave crickets" or "sprickets"... definitely worth Googling)

Camel crickets are small humpback crickets that are completely harmless to humans.  Creepy looking for sure, they like to hang out in caves or crawl spaces all around the south.

The interesting thing about these little critters is that their automatic defense is to turn and look you straight in the eyes, and jump at your face.

Just imagine me, crawling in a crawl space, unable to turn around, much less get a hand up to my face, and having these unknown critters jumping on me.  I'll have you know that I showed great restraint in not re-living the black widow incident, but got out of the crawl space as fast as I could.  Clarence was standing near the opening when I came flying out.  "What are those creepy little bugs that keep jumping on me?" I asked.  "Oh, those are camel crickets," Clarence said.  "There perfectly harmless, just remember to keep your mouth shut... they don't taste very good."  I got the feeling that his insight was from personal experience.

Clarence became one of my greatest promoters, which also meant that everyone in town heard about my camel cricket introduction.  I never lived it down.

Dr. Akthar said that the CT Simulation could take up to an hour and a half.  That is a long time to be laying there, bolted to a table.  As long as there are no camel crickets, I'll be fine.

I had a dream

Not much new to report about my progress today.  I have a first, virtual, appointment with Mayo Clinic on Friday, and I have my preliminary, treatment planning MRI and CT Simulation appointments with Northwestern on Monday and Tuesday.  The insurance company will make their decision as to which facility they will cover out of network by tomorrow, Thursday. Still waiting.

I have a dentist appointment today at noon, as part of a pre-treatment check up that Northwestern required.  I can honestly say that I have been to the dentist fewer times in my life than I have been to the doctor.  Preventive medicine has never been a high priority in my life.  I have been blessed with healthy teeth, and a mother that constantly warned of the hazards of eating sweets.  58 years, and I've had one cavity that required filling.  Some of you may be thinking, "You haven't been to the dentist in three decades, you may have a mouthful of cavities."  You could be right, but I doubt it.  

Another interesting "Joe fact" is that I have not used toothpaste since I was 13 years old.  I am totally serious!  The taste and the feel of toothpaste made me gag.  One day, I was in the kitchen while my mom was cooking, and she had a box of Arm and Hammer Baking Soda on the counter.  On the side of the box was an add that talked about using baking soda instead of toothpaste.  That's all I needed to hear, and have been using baking soda ever since.

More importantly, yesterday, Kathie had her knee replacement surgery.  I spoke to the doctor afterwards - all went perfectly as planned.  They had her up and walking by the end of the day.  If all goes as planned, I will pick her up this afternoon to bring her home.  This is Kathie's second total knee replacement.

We went to the pre-op appointment last week, where we met with the doctor and nursing staff to talk about all things surgery.  They showed the prosthetic that will replace her knee.  It is very different than the one she had 12 years ago.

The 2009 version looked quite barbaric.  Both titanium pieces had 6" spikes that were driven into her femur on the top, and tibia on the bottom.  Her recovery was long and painful.  The 2021 version has no spikes for the top piece, and just a little stub for the bottom.  This new version is held in place with glue, unlike the 2009 version that required glue and screws.  All of the differences will hopefully translate into a quicker, smoother, and less painful recovery.

I had a dream.  OK, it was another one of my weird dreams.  I wasn't going to tell you this, but the writer in me can't resist.  I have to preface this by reminding everyone that it is only a dream, and that I have no control over my dreams.  It is not prophetic, just another one of Joe's weird dreams.

Last night, I dreamed that, sometime in the distant future, Kathie passed away.  Per her request, she was to be cremated.  It was time for us to go to the funeral home and receive her ashes.  All of the kids and I waited patiently, mourning the loss.  Suddenly the door swung open, and the Director carried out an ern that was the size of a five gallon bucket.  We were all shocked to see it.  It wasn't the one that we had picked out.  

Noticing our bewildered look, the director quickly explained, "It was the only one that all of her hardware would fit in."  We opened it to find a small amount of ashes, and the hardware from both her knee replacements, the metal in her wrists, the hardware from her cervical spine surgery, both hips, and a shoulder!

You can all grown, laugh, or just shake your head.  It was just a dream.

Kathie is the bionic woman.  She is carrying more metal than a Green Beret.  She is also as tough as a Green Beret.  Hopefully, she won't take offense to this, and her recovery will be quick.  She's used to my weird sense of humor.

Thanks for all of your thoughts and prayers.

Moving right along

I had my long awaited, virtual appointment with Northwestern yesterday.  The meeting began with a nurse, Kim, who asked a series of questions that, as it turns out, I was supposed to have completed before the meeting.  She said that almost no one completes the questionnaire before hand, and she was happy to guide me through it.  

The questions ranged from the clinical aspects of my disease, which included; When did I first have symptoms?  When did I feel the need to see a doctor? Etc? The questionnaire also delved into the personal; Do I have an Advanced Directive on file? Do I have a Living Will?  Do I have a Power of Attorney on file?  Who would be my first point of contact in case of emergency?  Who would be on a list of people that they could share information with?

After answering all of the questions, and asking a few of my own, Kim signed off and asked that I stand by for Dr. Akthar.

I sat there, in my oversized simulated leather chair, laptop on my lap, with the sun shining on me, waiting for the doctor to come on.  It was the perfect recipe for taking a nap... which I did.  I awoke to the doctor saying, "Hello Joseph, I'm Dr. Akthar".  

Now, I know from experience that I snore the loudest when I am sitting up, with my head tipped back. This was the exact position that I was in when the doctor came on.  I looked at the clock to find it was 30 minutes since Kim had signed off. He apologized for the wait, but made no comment as to whether or not I was snoring.  I'm sure that I wouldn't have been the first.

He reviewed my history in a "Reader's Digest" style, condensed version.  I've had several doctors along the way.  Each having notes that Dr. Aktar read in chronological order.  "It has been quite a journey for you", he said.  Yes, it has.

Through split screens on the computer, he showed me the step by step procedure of Proton Beam Radiation therapy.  He explained that protons could be targeted to absolute precise positions within the body.  

The first step will be to make me a custom mask that will hold me in position on the table.  It is some kind of material that resembles a net, that when warmed, becomes pliable.  It is shaped around my head, neck and shoulders.  During the procedure, It will be clamped to the table so that I am unable to move - not even a little - which as you can imagine is a very good idea when shooting radioactive protons into my head.

Before any treatment begins, I will travel to the facility in Warrenville, IL and have another detailed MRI, then what is called a CT Simulation.  This is a very detailed CT that the computer will use to target exactly where the cancer is.  Dr. Akthar will work with his team to map out the exact locations that the computer will follow.  This part of the process will take about two weeks to prepare.  That's a bit of a bummer, but I'm getting used to the delays.

Minutes ago, I received a phone call from Jennifer, my Nurse Navigator from Northwestern.  Jennifer is my planner, organizer, advocate, and for all practical purposes, my go-to gal to Northwestern.  She is trying to coordinate all of the appointments that need to take place before treatment.  It looks like it will be the week of February 22nd before I can get in.  That puts me into the second week of March before treatment can begin.  Ironically, that will be exactly one year since the symptoms first began.

Jennifer understands my anxiousness to get this going.  She said that the team also understands, and is also keenly aware of just how rare this cancer is.

One of the key terms of my diagnosis is; Perineural Tumor Spread.  This means that the tumor is spreading along a nerve, or in my case, a series of nerves.  That, in itself, is not uncommon.  When you add to it, Squamous Cell Carcinoma (SCC), that makes it a very rare form of cancer.  SCC does not respond well to Chemo alone.  It can only be stopped with radiation.  I will receive both, with radiation being the primary treatment, and chemo just to clean up any cancer cells that may survive the radiation.  Jennifer assured me that the team that is working on my case is the best there is.  They will take the appropriate time to get it right.  I can't ask for more than that.

Northwestern knows that I contacted Mayo first, and that they are also working on a plan for me.  They said that I should keep both centers going since we don't know what the insurance company may say.  If the insurance company has a previous relationship with Mayo, they might send me there.  Surprisingly, both Jennifer and Dr. Akthar said that they would be more than happy to share any information that Mayo may need to help me get treated.   That was nice for them to say.

The uninvited intruder

The problem with most cancers is that they quietly spread, undetected, as they invade their host.  That is what makes cancer so scary.  The thought of this creepy, uninvited intruder making it's way through your body is the ultimate violation.  One minute you are feeling fine, then the next minute, you find that it has been hard at work - for weeks, months, or even years - without you even knowing.

I grew up in the once small town of Poway, CA - a northeast suburb of San Diego.  I've moved away over 30 years ago, so I can't speak for the present.  When I was growing up, there were two pests that we had to always keep an eye out for - Pacific Diamondback Rattlesnakes and Black Widow Spiders. They seemed to always be lurking around, undetected, until you kicked over a rock, or turned over a log.

They were both dangerous.  The bite of a rattlesnake could do serious damage, and if left untreated, could kill a man.  But, to me, the bite of the Black Widow was the one that I feared the most.  Only about the size of a quarter, this little spider was known to put a kid down for two weeks with horrible flu-like symptoms.

One summer morning, my brother Jim an I were tasked with the chore of cleaning out the woodshed on the side of our house.  It was just a four foot by eight foot lean-to were we kept a supply of firewood for those rare occasions when we would have a fire in the fireplace.  As we crawled inside this box, I started thinking to myself, "I know there are Black Widows in here."  I was on high alert, knowing that at any moment, I would pick up a piece of scrap wood to find one crawling on my hand.

The more I thought about it, the faster I worked, throwing everything out into the sunlight that wasn't nailed down.  In no time, we had the contents of the shed cleared out.  With a huge sigh of relief, I crawled out of the box.  Trying to calm down, catch my breath, and gain my composer, I turned my back to Jim.  Jim said with a stern, almost fearful voice, "Joe, you have a Black Widow on your back!"

My greatest fear became reality.  I began to scream like a school girl, "Get it off, get it off!"  I dropped to ground rolling on my back, hoping to smash it before it had a chance to bite me.  After flailing around for what seems an eternity, I looked up to find Jim standing over me with a shocked and bewildered look on his face.  He instantly busted up laughing, saying, "Man, I was just kidding."

I'm glad there are no Black Widows in Wisconsin.

In a way, I suppose that I am luckier than most.  Since my cancer is attacking nerves, there have been very clear, very defined symptoms throughout the whole process.  Well, at least it can be seen in hindsight.  I could feel it creeping around, I just didn't know what it was.

As it made it's way, following the path of my nerves, different areas of the left side of my head would begin to experience sensory and motor issues.  My left lower eyelid and left upper lip started first, followed by a loss of feeling in my left upper teeth, gums, and palette.  That is the Infraorbital nerve.  I noticed that my chewing muscles (Muscles of Mastication) on the left side became week and stopped working.  At the same time, my lower teeth, gums, and half my tongue started aching.  That's the Mandibular nerve.  Now, I am experiencing pain around my left eye, forehead and scalp.  That's the Ophthalmic nerve.

Mine didn't sneak up on me and say, "gotcha", but it did still say, "gotcha".

I'm still on schedule to talk to Northwestern this coming Thursday at 2pm.  I just spoke to Mayo Clinic who set up an appointment for Friday the 19th.  Whoever can start treatment first is the one I go with.

Thank you all again for your thoughts and prayers.

A lesson in humility

This entire experience has been a personal journey into areas of my life that I have seldom, if ever, ventured into.  Up until a year ago, I have only donned a hospital gown once in my life.  Now, walking down the hallway with the rear flaps open doesn't even make me shiver.  Needles were one of the few things that I would have claimed to be deathly afraid of.  This being due to the multiple shots of ice cold penicillin (right in the back side) I received as a child, to fight off my chronic ear infections.  It's amazing what you can get used to when you don't have a choice.

One of the hardest things for me to do has always been to ask for help.  I am your average Joe that never asks for directions, usually works alone, and rarely ever asks for help.  Cancer has taught me that survival and recovery is a team sport.  You can't do it alone, and to me, that is a tough lesson to learn.

Having someone to listen when you need to talk is so important.  Again, talking about my problems is something that I would never do before.  It has been a lesson to me to be a better listener.  When people are hurting, they generally don't need someone to give advice or to fix their problem, they just need to be heard.  I am fortunate to have a few people that will let me say, "My head is killing me today."  And, more importantly, to understand that I'm not asking them to do anything.  No response is required.

I'm still waiting for an answer from either Mayo in Rochester MN, or Northwestern in Warrenville, IL.  I have a virtual appointment with Northwestern on Thursday, so that puts them in the lead for my treatment.  I think that I have mentioned before that housing is going to be a problem at either facility, due to Covid-19.  Proton treatment will be every day, Monday thru Friday, for seven weeks.  Insurance will not pay for housing.  Under normal circumstances, the American Cancer Society has facilities for housing patients in long term care, but due to the pandemic, they are all closed.

I may be forced to ask for help in making this possible.  If it's Northwestern, I may have to ask some old friends if I can crash on their couch - and I realize that would be a huge ask - something that I would have never considered before.  I'm looking for options of hotels or extended stays that are open.  I'm sure that either facility can help me find something, somewhere, for me to stay.  I can't be the only one needing treatment right now.

Of all of the humbling lessons I have learned recently, asking for money is the toughest for me.  My daughter Jessica has set up a GoFundMe page to help cover my medical expenses.  I've learned to ask for help.  I've learned to ask for advice.  I've even learned to ask someone to listen to my complaints.  But, asking for money is something that I really struggle with.  I'm thankful that Jess took it upon herself to do this for me, and thankful for everyone that may donate. Please don't feel any pressure to donate, but if you are on social media, please share it.  I don't know how, but I will do my best to pay everyone back for their generosity.

I truly believe that the Lord has a plan and a purpose for this.  I can't imagine what it might be.  

Could it be a light at the end of the tunnel?

I'm still working, as much as I can.  I have good days and bad days.  I'm self employed, so I don't have any paid time off, and yet the bills keep coming.  

But, in all of this, the one thing that I have found is that I feel so much better when I get up and get going.  Maybe it's psychological - it puts me in a different frame of mind.  Maybe it's metaphysical - increased heart rate and respiration has to be good for me.  Whatever it may be, I need to keep doing it.

Word is getting around in our small, small town that I have cancer.  And, in the typical small town fashion, people love a new story.  What cracks me up that half of those who know me are concerned and sympathetic (believing that I am on my deathbed), while the other half doesn't believe that I am sick at all (they report constant "Joe sightings" as I go to Builder 1st Source or Ace Hardware to get supplies).  I'm sure there are conspiracy theories circulating on both sides. 

It's too easy, when you're feeling lousy to just stay in bed, or sit back in my big green chair as I do.  I can usually get 4 - 5 hours of work in before I start feeling like my body is running out of gas.  I think it is also important to not push it too far.  I can feel the cancer is requiring that my body expend a fair amount of energy in an attempt to fight it off.  The problem is that my body doesn't realize, just yet, that it is no match for this unwanted invader.

On a brighter note, I couldn't wait any longer on a chemo haircut, so I went and got a fresh buzz Tuesday morning.  It has a way of making me feel better.

I'm not entirely sure what the deal is with Mayo Clinics.  It has been almost two and a half weeks since they received the referral from my doctors, and I feel no closer to an appointment than I was when we started.  I've stayed on top of it, and called every day, and every day, they seem to be waiting for one more thing.  I call Marshfield Clinics, and they don't have any records requests in the system.

Monday, I reached out to Northwestern Medical's Proton Center in Warrenville, IL.  We lived in Warrenville for 12 years while the girls were in school, so we know the area well.  So far, they seem to be genuinely excited to have me as a patient, but, so was Mayo in the first few conversations.  

So far, I have spoken with the admissions department, then a nurse that took notes on my story.  They met this morning with the chemo and proton radiation teams who determined, by the basic information, that I am a good candidate.  They emailed a "Release of Information", which I signed and returned right away.  They will get everything that can be sent electronically tomorrow.  I already have an appointment for Thursday of next week to meet with the medical oncology, and radiation oncology teams.  Let's pray that all goes well.

I'm not sure about housing arrangements at either facility - Mayo in Rochester, MN, or Northwestern in Warrenville, IL.  Covid-19 has most housing facilities closed.  I have to think that they have some arrangements for people like me that come from far away.  Otherwise, I might have to call in a favor from old friends, and see if I can crash on their couch for seven weeks.  Commuting four and a half hours (one way) to Rochester, or five and a half to Warrenville is a little out of the question.

The doctors, at both facilities, seem to be in agreement on their treatment outline - three rounds of chemo, spaced three weeks apart, plus proton beam radiation every day for seven weeks.  At that point, they will evaluate the progress and see if I need to keep going or not.

On a side note, my wife Kathie has been waiting for a year to have a total knee replacement.  Again, Covid-19 has been an obstacle, since it is considered elective surgery.  Well, she finally received a surgical date of February 16, 2021 - yes, two weeks from now.  Not ideal timing.  Chances are good that I will be starting my treatment at about that same time.  If she passes on this date, it could be another year before she gets another date.  I am pushing her to have it done.  There is help up here for her post-operatively.  I have to believe that she will be provided for.  Hopefully, the recovery will be quicker and easier than when she had her other knee replaced 12 years ago.  

Things appear to be moving in the right direction.  That might just be a light at the end of the tunnel.

All of your thoughts and prayers mean so much to us.