Posts

The Mask and Radiation

/0 Comments/in , /by

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.

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.

Initial Consultation

/0 Comments/in , /by

I met initially with Dr. Bradley Marple, a seasoned surgeon who knows his stuff.   We reviewed the scans and he informs me we will become very good friends over a period of years.   That this condition has a high recurrence rate and we will be staying in a monitoring pattern for years to come.   I mean, the guy was cool and I liked him, but this wasn’t exactly a social visit.  

What matters is Dr. Marple knows his stuff.  He concurs that this is a “non cancerous” tumor.  Relief. We schedule the surgery for about 4 weeks.   

In a pathetic appeal, I ask his assistant his assistant Sally if there’s any way to do it earlier. She literally laughed…these guys are in demand.  I get it. But she got the message. I wasn’t sleeping at this point and the tumor was preventing sleep and was really uncomfortable. She upped the date by two weeks.  Sally is my new best friend.

UT Southwestern

/0 Comments/in , /by

Having lived my whole life in Dallas-Fort Worth, I have been “aware” of UT Southwestern, but not really knowledgeable about it.  I knew it was big, one and the largest hospitals in town and the best doctors seem to come from the school there.

When my “Local” ENT told me he was referring me to UTSW, I was surprised.  He went further, he pointed me to the otolaryngology department there, which has over 30 doctors that specialize in these types of things.   He referred me to the department head. A veteran surgeon and has performed “thousands” of these surgeries over 27 years.  

OK, that’s my guy.    He went on to explain that at UTSW, since the tumor was so close to my eye and brain, UTSW can have specialists in the operating room in minutes.     Excellent.

All I can say is wow.  This place is incredible.  From the second I arrived, the care has been off the chart.    The place is enormous, with many buildings to navigate and departments, but they are all working together very well for me.   Right down to the way the staff greet you when you arrive.

I can’t help but feel grateful to have access to such tremendous care.   First off, you require a referral even to get an appointment. Second, I have the financial resources and cost risk in place to deal with it.   It’s also a huge reason to stay in a city like Dallas. I keep thinking, I could be stuck in some small town in Wyoming, hundreds of miles away from average care.  Here, I am 20 minutes from world-class.

Well, that wasn’t MY plan

/0 Comments/in , /by

So two days after we buy a new property, my Dr. shows me a tumor in my nasal cavity the size of an avocado.

Yes, an avocado, in my head.  That explains a few things.

That moment, we will come back to.  But many people have experienced the moment when they see something that is often fatal, or the beginning of a potentially very long painful journey.  What I did know, and the doctor confirmed, is this was not good.

The local doctor comforted me that this was very likely something known as an “Inverted Papilloma” which is caused by a viral infection and fairly common.     This doctor had the wisdom to refer me over to the best surgical and doctor teams in the Dallas/Texas area at UT Southwestern Medical Center.

OK, fine.  I want this thing out.  Now.

But I will tell you, in that moment – I didn’t experience fear, or panic, or anger or anything except gratitude.  You see at that moment, I truly had the understanding that every single day is a gift and who am I to complain about not getting frosting on my birthday cake …I was immediately grateful for all that I had and will have.   I can’t describe it totally, and even if I did it’s unlikely most will understand.

I don’t know how this reaction will turn my life but there’s a certainty, the world looks different today than it did before this moment.   I finally have an understanding of the reality that we all have. I’m ONLY here because HE wants me to be. I didn’t do anything to earn being here.  It’s a gift.

There is SO much evidence of God’s love around us.   The prayers, the support, the care, the doctors, all of it.   He’s everywhere. We just have to be willing to listen.

I’m definitely on a new path…not I just gotta figure out what it is.

Challenge accepted.

The Ascent

/in , , /by

This is a work in progress.  but right now, I plan to share this journey as best I can through the urging of a good friend.    This is raw.  This is real and my goal is to share what I learn with others.

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.