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Six Weeks Post Radiation – Quick Update

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So you know how a microwave oven keeps “cooking” the food even after it’s finished? I think radiation treatment is a bit the same. I naively thought that once it was over, symptoms would stop or at least start improving.

That’s not the case. But, I can feel it coming! Apparently, after some “research”, the symptoms “peak”, 4-6 weeks AFTER treatment ends. News to me.

According to the radiation machine’s manufacturer, Varian here’s their definition

The TrueBeam® radiotherapy system is an advanced medical linear accelerator—fully-integrated for image-guided radiotherapy and radiosurgery. and designed from the ground up to treat targets with enhanced speed and accuracy. TrueBeam treats cancer anywhere in the body where radiation treatment is indicated, including lung, breast, prostate and head and neck. Having the power to not only treat quickly, but also deliver highly precise dose rates are hallmarks of the TrueBeam system.

Varian Medical Systems on TrueBean Radiotherapy

I’m still not exactly sure what an “advanced medical linear accelerator” is. Here’s what they say:

A medical linear accelerator (LINAC) is the device most commonly used for external beam radiation treatments for patients with cancer. It delivers high-energy x-rays or electrons to the region of the patient’s tumor.

Radiotherapy.org

I’m only sharing this to set expectations for anyone about to do radiation. Especially radiation in the head or neck area. Those areas are apparently have tons of nerve endings making the process a bit more irritating to those tissues.

It’s OK, just means I don’t have to go to EVERY Christmas party or business trip. Hopefully just a few more weeks and the corner will turn!

Weakness in Healing. 3 Weeks Post Radiation

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Yes, that picture is me on my 50th birthday. I’m just a couple of years older now but have been through more. It seems to me that without THAT strength the process I’ve just been through of enduring two surgeries and 30 radiation treatments would have been MUCH worse.

So the preface for the little pity rant I have now is that without preparation and strength, weakness would have been MUCH worse. I thank our trainer and coach Adam Hammett for making this real. Without him, I’m really not sure how this would have gone. Worse for sure.

So I finished radiation treatment three weeks ago. I was excited for the discomfort to come to an end.

It hasn’t.

In fact, it’s stayed pretty consistent. Headaches, fatigue, sinus pain from the treated area and some other things I won’t bore you with. Let’s just say I still can’t taste or smell. I must admit to getting a little irritable. When I met with our Dr. last week I asked how long this will take.

‘They don’t know. It could be two more weeks, months or even years. “. She says.

Well shoot. Time to get used to the new normal I guess.

Look I’m thankful it wasn’t worse. I have my eye and all my brain still in one piece. But I gotta tell you until you see the light at the end of the tunnel this is annoying.

So I go searching for some kind of uplifting passage about pain and healing. This one came up.

“Surely he took up our pain and bore our suffering, yet we considered him punished by God, stricken by him, and afflicted. But he was pierced for our transgressions, he was crushed for our iniquities; the punishment that brought us peace was on him, and by his wounds we are healed.”

Isaiah 53:4-5

Like many of you, I’ve read stories about the suffering endured on our behalf. I have to admit I still don’t really get it. I’m not suffering I’m merely annoyed and hurting a tiny fraction of what He endured. Why are we so weak? I do not feel strong today but I know I am, because I know I am not alone.

I’m looking forward to getting through on the other end of this and being the man that endured and thrived.

Until then I need some pain medicine. 👍 .

Pity party over. Carry on.

5 Things I learned during cancer treatment. Oh yea, and I am cancer free! #cancerfree #fuckcancer

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I just completed two surgeries and 30 treatments of radiation for a very rare sinus cancer. I was super lucky. I have all my body parts, my face is a bit crispy at the moment, but it’s in-tact. I am so thankful for the doctors and nurses at UTSW. They are amazing. But, this journey is different for everyone and no one experiences it the same.

Here’s a few things I learned:

  1. Cancer sucks. It impacts just about everyone at some point in their lives either directly or indirectly. It doesn’t discriminate. White, Black, Hispanic, rich, poor, young, old, whatever. It doesn’t matter.
  2. How your show up matters the most. In my experiences watching people go through this there’s a tremendous difference in the victim, the passenger or the warrior. The victim complains, the passenger takes what comes without comment and the warrior takes command. I think everyone is different. I started out in the passenger camp and ended up in the warrior camp. Again, I’m lucky so it’s easier for me to be that way.
  3. Some of your “friends” are faking it. This one really sucks to write, but it’s true. Some of your so called friends really don’t care. I see this as a great opportunity to learn who those are and pull some weeds. I had one guy (a customer posing as a friend) ask if I had a autopsy done yet. I told him I wasn’t dead yet but yes, I had pathology done and the result was malignant. He answers, “Hey where’s that report your promised.” You don’t need fakers in your life.
  4. Treatment is incredibly draining. I didn’t do chemo, but I see the results of radiation. I am exhausted. I’ve never NOT been able to do something because I was too tired. If someone is going through this, give them some space.
  5. Every case is different. I feel like these doctors are chasing ants and killing them one at a time, and each ant behaves differently, eats different stuff, looks different, etc. It’s literally impossible to get all the different varieties. For anyone who has looked at this disease, the variations are so endless, I have no idea how we can beat it until we find the core issues causing it. I have no idea what that is, but I plan to support organizations that have an idea where to start.

Last but not least is the biggest one. I saw a tumor in my head that looked huge. It’s now gone. But consider this.

You are only here today because God decided for you to be. You could have stepped off a step wrong, pulled into the wrong lane on the freeway, choked on your food, had a heart attack, been murdered, ANYTHING. The odds are truly against us having a pain free and suffering free life.

The real question is “What are you going to do with TODAY?” It’s a gift, you are only here because God wants you here.

Charlie Alsmiller

Look I’m no religious bigot or crazy bible beater, I get it. I am friends with non-believers and I can see how they got to where they got. But, in THIS experience, God was EVERYWHERE. The nurses, the hospital, the doctors, the community, my family, my body. It’s impossible to ignore.

So my parting thought here is this.

What are you going to do with tomorrow? What are you holding back on doing? Who are you holding back on loving? What thing can you do that makes an impact? Tomorrow might be the day that you end up with an Avocado in your head, like me.

Contact me anytime, I am going to go back to my normal posts of talking about software, marketing, self awareness and the like too but one thing is sure. I am different and tomorrow will be different because God has given me a cancer free future.

Love to you all.

A Radiation Treatment / End to End in 30 Seconds Captured on Video #fuckcancer #radiation

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Today marks my 29th radiation treatment. It went exactly like the rest.

  • Arrive to awesome valet
  • Check in
  • Head to “Gowning” to change into my beautiful surgical gown
  • Wait a few minutes and chat with the other inmates
  • Get called
  • Head back give them my birthday
  • Lay down
  • Get zapped
  • Get up
  • Leave

Except today I snuck my fancy new iPhone in for a time lapse

I also realize that I’ve never actually seen this machine at work as I’ve been strapped on this table with this lovely mask.

So here it is. It’s really pretty cool.

[wpvideo jdscFHHq ]

This one machine does this 30 times per day. Saving 30 people.

Cool.

Gratitude in the Age of Entitlement

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I received notice today that our Health Sharing Ministry Christian Medi-Share had approved a $55000 bill from UT Southwestern for the first phase of my radiation treatments

What this means is my expense will now be shared with Medi-Share’s 200,000 members.

Medi-Share is NOT insurance. It’s a sharing ministry. I pay to support others and they pay to support me when we all need it.

None of us is as strong as all of us.

I can’t imagine a better example of this. As of today I estimate my total cost on this cancer journey to be well in excess of $100,000. Between wacky provider pricing, discounts etc you literally have NO IDEA what you’ve signed up for when you really need care. It’s so messed up.

When I checked in for surgery I asked “how much is this going to cost”? The answer was “would you like to speak with a financial counselor?” Oh and please sign this form accepting full responsibility for yet undefined and un-described liability.

Thank you sir now you can proceed to this life saving surgery that you need.

Wait! What have I signed up for? I have no idea. Would you buy a house for some unknown cost? A car? Anything? Nope. Yet this is exactly what we do now when we get healthcare under duress.

All I can say is thanks be to God for the protective layer of insurance and medical sharing ministries like Medi-Share.

Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God.

Philippians 4:6

I am so grateful I don’t know where to start. Maybe I’ll start with tomorrow.

Today I listened to Metallica during radiation treatment and it was awesome. #Metalica #Beatcancer

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So I am now 26/30 of these treatments completed.

I’ve got the process down. You go in, you lay down, you put in your bite block, they clamp you in and the machine moves all around for a while (I assume they are taking images) , they take pictures, you wait for a doctor to approve, they zap, they move the table, they zap again and they come in and take your mask off. Every day, same process. It’s very predictable now.

The first process is the alignment of the Varian TrueBeam machine, which this huge machine rotates all around you. The machine itself is really cool and apparently can cost upwards of $5 MILLION which explains some of the ridiculous cost of this treatment.

Anyway, the staff is always super nice and friendly. Since getting strapped in a mask onto a table like this can be stressful, you have the option to listen to music of your choice, etc. Personally, I used meditation, which I no longer need to NOT feel anxious. After 25 sessions, I know what to expect, and the anxiety is lower now.

So, today I didn’t choose some slimy ballad or new age junk, I chose the Metallica station on Pandora and it was AWESOME.

I listened to Disturbed (down with the sickness), Ozzy, Metallica, and a few other head-banger bands that just put me into this “Screw-you cancer” mindset.

Managing your head is so critical in all this. You can be a victim or you can just say you know what, screw you cancer and I am going to kick your ass, with alot of help.

In my experience, listening to head-banger music s better for that than some wimpy music. But, hey YOU get to choose. All good.

Do not conform to the pattern of this world, but be transformed by the renewing of your mind. Then you will be able to test and approve what God’s will is—his good, pleasing and perfect will.

Romans 12-2

The power to choose how you think and how you feel as a result to me is one of the greatest gifts that we have. In Stephen Covey’s famous book, the Seven Habits of Highly Effective People, it’s chapter one. YOU have control of how you choose to respond. And with that, you have the power to choose what enters your mind and what doesn’t.

Today, I chose Metalica and it was awesome.

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.

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.

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.

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.