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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.

10 Days Complete. Feeling stronger every day.

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I completed radiation 10 days ago. I must admit I haven’t felt any better over the last 10 days until today. It was small and I’ll spare you the details. But finally a small improvement.

I guess I had expected the effects of radiation to wear off faster. No taste, burned sinuses, burned face and eyes. Yesterday I was able to hit the 10,000 steps demanded by my Fitbit but then I slept for 12 hours.

Oh and it doesn’t hurt that we are on a cruise with our friends. 😎

More to come. Feeling stronger every day.

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.

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.

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.