Posts

Weakness in Healing. 3 Weeks Post Radiation

/in , /by

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.

Gratitude in the Age of Entitlement

/0 Comments/in , /by

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.

Have you ever seen your own brain? I have.

/0 Comments/in , /by

2nd Surgery

We moved quickly to the second surgery.  It seemed like an almost duplicate of the first just two weeks earlier.  Except for this time, for some reason, I stayed awake all the way into the operating table.  I was able to glimpse some of the “tools” Dr. Marple will be using to conduct this surgery.  They looked like spoons, hooks, forks all with really long handles.

OK, put me out. Now.

By all measures, the surgery went well.  What I was unaware of was exactly how “deep” they were going.  They essentially removed an entire piece of my skull at the top of my sinus.   Now that made for an interesting headache.

On a follow-up visit, a second doctor scoped the area and actually showed Mary and I my brain pulsating at the top of this hole.   Cool. Now how many people you know can say that they have seen their own brain?   

My comment to my wife, “See, I really have one”.  Her response, “Well now there’s no excuse”.   Nice.

This surgery was a harder recovery, but it’s been consistent and I am feeling better every day.

Julie

My surgeries were performed at one of the smaller hospitals in the UTSW system. That said there are alot of nurses and people working.  In fact, it’s overwhelming. After the first surgery, our nurse was “Julie”, who was super nice. She helped make sure I was ready for the trip home and checked off all the tasks before I could be released.  She called the next day and that was that.

Oddly, on the second surgery, we had Julie again.  Out of dozens of nurses, what are the chances? Anyway, we got to talking and she is clearly a “Christian” and we opened a conversation with my daughter about the miracle of life and the human body.   She used the opportunity to describe it all as God’s work and we went on to pray together.    

It was really special.   I found her on facebook and I hope that we remain connected.

I did say to her, “don’t get yourself fired”, she just laughed and said, “I’m old and not afraid of that”.  She was definitely an angel that day.

Sally

Sally is Dr. Marple’s assistant.  To say she is a formidable woman is an understatement.  She manages his schedule, answers questions, prepares patients, etc.  She is incredibly competent and kind.   

Honestly, when I first met her she was a little intimidating, but as this has evolved I appreciate her more and more every interaction.   Her attention and care has made a huge difference.  Another angel in the mix.  

Surgery and the Call

/0 Comments/in , /by

1st Surgery

We arrive at Zale Lipshy hospital (part of UTSW) and we are greeted by valet parking and smooth check-in.   I’m starting to get a little “fiscal anxiety” because no one can seem to tell me what anything costs or what my responsibility will be.   Deep breath. It will be OK.

The staff proves to be incredible.   I moved from a pre-op, into the surgery itself smoothly, greeted by Dr. Marple in the operating room.   Honestly, I am glad they put me out because I did catch a glance at the “tools” available to him, which appears to consist of a collection of hooks and spoons all designed to go up my nose.   Night night, I’m done.

I wake up to almost no pain and the Dr. explaining they successfully removed the “entity”.

I have a really nice discharge nurse, Julie, who walked through the process including pain management, etc.   

So far so good.  I can breathe. Literally.  The doc schedules a follow up visit in one week.  All good.

The Call

8AM on day 6 after the surgery I get a call from Sally.   She asks what I am doing today and how long it will take me to get there.

Umm, about 40 minutes.   She says just come on down now.

Ummm, OK.  This isn’t good.  We head that way, a little pit in our stomach.

The New Diagnosis

Dr Marple enters the room.  He says there’s been a “change”.   Apparently the non-cancerous thing is actually a rare form of nasal sarcoma like I know what that is.    It’s now about 9:30 AM and he informs us that my case was reviewed by the ‘tumor board’ at UTSW this morning meaning they had to meet at like 7AM, which is a multi-disciplinary panel of experts. Neurologists, Otolaryngologists, Oncologists, etc.    This entire group of really smart doctors reviewed my case as a team and came up with a consensus on my treatment plan.

Whoa. I almost lose it in gratitude. Again.   

The professionalism and skill of these doctors is beyond me.  The care and connection to detail is such a contrast to my experience in the past.  Wow.

I also have a new Dr.  A radiation oncologist.   The treatment plan consists of removing a fragment of my skull where the tumor was attached and covering it with a “vasculated flap” which will eventually turn into scar tissue.

Again, while I am not worried – I am grateful.  I have no idea why.