On July 11, 2019, I was diagnosed with a large tumor in my sinus cavity. It was about the size of an avocado. This tumor turned out to be a malignant rare sinus cancer. I am currently undergoing treatment at UT Southwestern Medical Center in Dallas.

I have decided to write about this experience and share it one piece at a time. There’s so much here, I feel the need to capture the feelings, emotions, joys and anxieties with this process.

There’s so much I don’t know about this process, even the parts already completed. Experts, surgeries, drugs. All stuff I don’t know anything about or understand.

One thing I do know is that I am already different. This is my story …I will update this regularly. Please feel free to contact me if you have any comments or questions. My hope is to share one process to help others who may be facing similar circumstances either themselves or their loved ones.

The Mask and Radiation

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So this is my custom made “mask”. It’s designed to hold my head in place down to the millimeter.   It was molded to my face specifically and basically straps me to the radiation table.

I must admit the process is unnerving.   You get a mouthguard which forces you to breath through your nose, yes the nose I just had surgery on.    They strap you down, and shoot radiation at you. But they are really nice about it. In my case, they asked what music I liked and they cranked up pandora during the process, which takes about 20 minutes.

Now, I know some people are into being strapped down onto a table and being helpless, but not me….I’m working through some pretty cool mind games to get through this.  One of the tools I am starting to work with is meditation. Centering your the mind during this process is already making a HUGE difference. While I am only 10% done (3 sessions) in today.  I expect I’ll have this nailed by 30..

At this point, I am already planning a spectacular demise of this mask when we are done with it, likely involving a shotgun or AR-15.

Radiation

I’m still learning about the basics of how this works.  But let’s just say that this radiation is incredibly targeted and advanced.  Its accuracy is measured in millimeters or almost down to the cellular level.  I still don’t get it.

The Men’s Locker Room

The cancer treatment center at UTSW is a huge facility.  They operate seven (7) parallel radiation machines. Today I calculated they are running at least 200 sessions per day out of this facility.  At $2000-$4000 per session, this thing is pumping out an estimated $500K in revenue per DAY. So this “business” is pumping out at least $150M annually, probably closer to $200M.  But this I just my back of the napkin calculation.

So the way this works is you arrive and go to “Gowning” where you basically change and put on a beautiful surgical gown.   The men go left and the women go right. In this “locker room,” you wait for your technician to come and get you.

Now I’m only three treatments in and have had different times each day, but I’ve noticed the men in my “locker room” are all pretty familiar with each other, even friends.   They are all sharing stories of their journey. “I’m on 13 out of 30” or “What are you in for?” and my favorite comment today was “Man they really smoked my ass yesterday”.

This morning on my way in, a sweet older lady was sitting right next to the entrance to “gowning”, she was sitting up very straight and looked concerned.   I caught her eye and just said “Hi”, we chatted for a minute and I reassured her that this place is the best. Like I’m an expert after two sessions. Anyway, I went inside, saw her husband “James” who was on treatment twenty-something. 

So that sweet little wife has been outside with that anxious face for at least twenty sessions. That’s one lucky dude.

In fact, I’m a pretty lucky guy as well.   Mary is insisting on coming with me to these treatments every day.   She doesn’t look as anxious as James’ wife, but I think she probably is.

Fiscal Anxiety and Medical Care

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So this cancer journey isn’t cheap. As it stands, UTSW has roughly $60,000 in outstanding medical bills which I am sure are being “negotiated”.     Radiation, I understand costs roughly $3500-$4000 PER SESSION. I will be having thirty. That’s an estimated cost of $180,000-$200,,000 SO FAR.    

Needless to say, I have been feeling a bit anxious about the fiscal part of this journey. 

We don’t carry regular insurance, we use a “medical sharing” program called “Christian Medishare” which is pretty much off the grid when it comes to regular insurance.  In fact, they make a point of saying it’s NOT insurance. The way it works is members’ medical bills that meet the guidelines for “sharing” are shared across the community.  With almost 300,000 members, it’s a pretty powerful sharing pool.

That said, there’s no real contract which says they MUST share, and the rules are a bit confusing and things like pre-existing conditions do come into play.   So, needless to say, until last week, it was still undetermined whether or not I would be fully “shared”.

I had received a call from a “Case Worker”, who had asked a lot of questions which really made me nervous, but all in all, they were being really supportive.   She asked if I would be OK if they “negotiated” with my providers. Of course.

A few days later, I get the call from the “VP of Cost Management” or something like that.   My first reaction is this is not good. I could not have been more wrong.

This guy proceeds to tell me that not only have I been 100% covered/shared but asked my permission to “Pre-pay” all 30 treatments.   This I am assuming is a way they help control costs and a strong negotiation card to play. I’m speechless and thankful.

For all the people who criticize Medishare, I can’t say enough.  These people are amazing. I’m a member for life or as long as they’ll have me.

Here’s a link to sign up for Medi-share.   Full disclosure, if you sign up, I get $100, which I will promptly donate.  If you have a request, just let me know.  This is a very real and very effective alternative to traditional insurance.

All I can say is one word.

Gratitude.

Legacy by Design

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In September, the first week of treatment I attended “XCentric” which is a super-cool event put on by “EO” or the Entrepreneur Network that I belong to.  The location is moves around and this year it happens to be in Dallas. Me and 500+ other “misfits” who start and run businesses get together, network and hear some amazing stories and speakers.

This year’s event is about “Legacy by Design”.   I’ve always been a fan of “Lifestyle Design” and other proactive ways of planning.  

This year one of the speakers told the story of his wife’s inoperable brain tumor, which is basically inaccessible due to the location, meaning they don’t know if it’s benign or not.   He told the story of how this changed his “lens” and his life in a pretty dramatic way.   

We also heard the story of Bradley Callow, who was to be our keynote speaker who was fatally shot tragically a few weeks earlier.  Needless to say, we all now are thinking twice about our “purpose” and our “legacy”.

Life is short.  It’s a gift.  Get over yourself and accept it.

Bingo.   I think I know now that this story needs to be shared – however it ends.

What I will say is I’ve made no secret of this journey.  I post regular updates on Facebook and the EO community has been amazing and supportive.   

Proof that you should behave in life

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This morning I arrived in radiation to my normal group or locker room members.

Mind you we’ve only been chatting a few days and while we know names we only know first names and some basics.

James has to drink 32 ounces of liquid before his treatment. Ann his wife waits patiently for him outside. Ray is an Air Force academy graduate and so on.

We’ve never gotten to last names. So imagine my surprise this morning when I walk in and one of the guys says “it’s Charlie Alsmiller”.

Hey I was sort of enjoying being anonymous here. Turns out this guy went to school with one of my wingmen that did our Colorado hiking trip and somehow they put two and two together that we all knew each other.

Now the Dallas area has 7+ MILLION people. What are the chances of that?

Bottom line. Behave in life. It’s truly a small small world.

Don’t be an Asshat

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I am doing radiation for cancer. It sort of sucks. More for others than for me. Believe me, some of these guys are going through some crazy stuff. Throat cancer, tongue, prostate, you name it. These guys are going through it.

Personally, I feel like I’ve been grazed by a freight train. Lucky to be alive and I have all my major organs and body parts. Praise the Lord.

This guy shows up yesterday. Remember that this place treats over 200 people a day with life-saving radiation. They do an amazing job of staying on schedule.

This dude shows up early, and demands to be treated right then. He said he has tickets to see the Rangers tonight. And his tickets cost $150. I looked at him and asked, oh man – they are pretty good. How many treatments are you in for. “Two” he said. “Two”. Dude next to me is doing 40 and doesn’t have a prostate, another guy is having part o his face removed.

Dude, really? In his self-absorbed stupor, he forgot to take a careful look at what’s right in front of him. There was a chance to show some others that someone cares for them.

Instead, he chose to be an asshat.

Don’t be an asshat.

The Probability of the Improbable Thing

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I heard a very interesting quote this week.

“Never underestimate the probability of an improbable thing happening to you”.

We all do it, oh I can text and drive, I’ll be fine. Oh, I’ll have one more beer and head home, oh I can smoke, it won’t catch up to ME. Well, I did it too. I assumed that since I eat right, workout, don’t smoke or do drugs I’ll be fine.

Nope, I got one of the rarest cancers out there. Even my doctor who has done 1000s of surgeries has not seen this. Mary calls me the “rare sinus carcinoma guy”. She’s guessing I’ll be part of some paper sometime. Cool, I’ll at least be famous that way.

The point is this, live your life today. SOMETHING is going to happen that you don’t expect. Get over it. In business, I called these “Scuds”, which as you remember in the first gulf war the Iraqis would hurl these huge inaccurate missiles over at Saudi Arabia and you had no idea where they are going to land.

In my business life, the first big SCUD was the crash of 2002. It killed my business. Crap, well gotta get up again. The second big scud came 6 years later with the 2008 crisis.

You know what, we survived. You will survive.

Plan, be ready for it, have backup contingencies, but most importantly, don’t live in fear and live the life today that you dream of living.

Managing your Mind During Radiation Treatment

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So today marked the 12th radiation treatment. Up early, hit the road, get dressed, get strapped down, come home. Groundhog day.

I described this as the long-strides of the treatment. So far, I’ve had no meaningful side effects, but I am the lucky one. For now, I am enjoying contemplating how I can use the mask and surgical gown as a Halloween outfit.

I have been learning to meditate. It’s been incredibly effective in managing the effects of the strap down, can’t breathe, can’t move, hey I am being radiated feelings. I’ve only begun.

I’ve been using headspace, which is great – but there are tons of them out there.

Here’s the magic, you CAN control what you think and how you feel. As a result, you CAN control how you react to just about any situation.

Charlie Alsmiller
For me, I have chosen to view the “mask” as a sort of superhero mask, making me stronger. So when they strap it down, I choose to look at the pressure as sort of a comforting blanket rather than something choking me.

This is huge. The notion of managing your mind I believe is the very first step in taking control of your destiny.

Screw You Cancer. I’m winning with ALOT of help.

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So today marks 15/30 treatments. We took our caregivers cupcakes. Not sure why but that made me feel better. I also started feeling some side effects. Mainly the driest nose on the planet. Everything seemed to make me sneeze and it’s so dry it just hurts.

Still I have it really easy.

Today also marks the day a good friend of ours had surgery to remove a portion of her tongue. Poor thing has it way tougher than me. We are praying hard for her tonight. She’s got a long road ahead.

All I can say is this disease sucks. It’s way too commonplace now. It seems that everyone is impacted at some point in their lives. It’s also super sneaky and so many different varieties I don’t know how these doctors keep up. I’m so thankful for the technologies we have and the power we have to fight this shit. This radiation machine is amazing.

All I really know is that I’m winning and there’s no way I could ever beat this alone.

Say a prayer tonight for everyone who is suffering with this awful disease.

And say a prayer for the amazing doctors, nurses and technicians that make the healing possible.

I was grumpy yesterday. But ice cream makes it better.

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Radiation treatment feels like Groundhog Day. And you are the groundhog.

I was grumpy yesterday.

I yelled at my dog.

I was upset about some issues at our house.

I was irritated by a client.

I cranked at my wife.

I wanted to be with my friends on a long planned trip that I canceled.

My eyes hurt. My nose hurt. I’m tired and don’t have the strength and stamina I expect of myself.

But I still got calls and checked on from friends. My dog still loves me. And my wife was sweet to me. I know things are easy for me relative to other people.

Yet why do I choose today to look at the negative? I’ve been staying pretty positive. I guess it’s really pretty simple.

We’re human. It’s ok to be grumpy sometimes. Just remember you are loved no matter what.

And get some ice cream. It made me feel better even if I couldn’t taste it.

This is the face of radiation

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I didn’t want to post this. It makes me look older than I feel. Oddly I am embarrassed by it. A friend said it looks like a bottle of tequila and a sunburn. True.

Look this is temporary. I’ll get through it. The radiation is killing the bad stuff and it’s hard. That stuff if stubborn so it only follows you gotta give it your best back.

This is temporary and I’ve got it easy.

A friend of mine called yesterday and he’s facing blindness. Yes. Diabetic induced blindness. Years of high blood pressure and high blood sugars are catching up. He doesn’t deserve it.

Well neither do you. Neither do I and neither does any of the fine men I talk to daily during treatment.

That said I’m excited to meet the stronger man on the other side of this.

Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds. ⠀

James 1:2

Thanks. I’m not sure if that makes me feel better or not. But I’ll take it.

Now on to the last 9 treatments before I get to see what’s next.