That’s the best word I can find for what I’m trying hard not to be.  This damn osteoradionecrosis (ORN) is a curse.  It only occurs in less than 8% of patients who’ve received neck radiation and I’m one of them.  Not only that, I got it quickly.  If there is good news, it’s that there is still a chance my face won’t need to be reconstructed.  But that’s still an unknown.

Supposedly, the Maxillofacial Reconstructive Specialist (MRS) I am seeing is excellent.  Everyone tells me that.  What is baffling is that there is no visibility into how extensive the bone degradation is prior to going in.  No type of dental CAT scan?  Direct x-rays?

The MRS works with the surgeon. Together they’ve done hundreds of these.  They’ve done hundreds with others.  They told me this past week that the best option was to go in (under the knife) with the hopes of digging out the ORN and patching things up with skin from my mouth.  If so, I’d be in the hospital overnight and I’d have maybe a 50/50 chance that this would stop the necrosis.  If however, they see that the simple patch up would not result in at least a 50/50 result, then they want my (pre) authorization for a more extensive flap operation.

The flap operation means they’d take the largest vein out of one arm (from my elbow to my wrist) and also take a large patch of skin out of my wrist.  They would also slice into my neck externally and try to reattach the vessel in the jaw area and lay the skin from the wrist over where the teeth were and hope that this process would arrest the necrosis.  This option would mean 7-14 days in the hospital and a recovery of six weeks.  During those six weeks, my face would be swollen.  So essentially, I’d not know going into the hospital whether I’ll wake up and come out the next day or wake up with stitches all over the place and a significantly longer stay.

The whole point would be to avoid the even more brutal operation of a full plate and harvesting bone from the leg.  That would be even a bigger operation.  I’ve seen some of those patients and it’s not pretty.  From what I’ve seen, it looks like disfigurement so I’m trying to keep that image out of conscious thought.

Point is, what a heavy price to pay for getting rid of the tumor on the base of tongue.  I should be good to go, but I’m not good and not going.

So what to do?  Think ‘at least it’s not worse?’  I’m thinking back to my son, who at age 19 was involved in a horrible life-changing accident that left him paralyzed from the waist down.  To wake up discovering that you’ll never again be able to walk must be a mind blower.  I’ve got to admire his strength and understand him.  I’ve got to stop myself in my tracks and shed the distraught feeling when I’m thinking about this pending operation, and think of him.  When I do, all of a sudden what I’ve got to deal with pales in comparison.

This mess is happening for a reason.  It’s never the situation we are in it’s always about how we handle what we are in.  If only I weren’t such a wimp.  Getting out of this wimp head is my biggest challenge.  But it should be easier if I keep thinking of my son and somehow absorb a tad bit of his strength.

Distraught is the enemy.  The trick is not being my own worst one.

At least for today, I was able to squeak in another causal ride.

6 thoughts on “distraught

  1. Susan M Forney

    Freddie: I’m so sorry for what you must be going through. No one, expect the other 8%, can fully comprehend just how distraught you must be feeling. I recall a phone conversation we shared when I was going through a difficult time in Dallas. You said, “Lucky us, we get out of bed and walk … we don’t wake up to blackness because we have our vision.” Imagining the alternative, as you have with your son, put things into perspective for me.
    It’s good we live in a time when cancer can be fought, often with a successful outcome, and there are doctors who specialize in ORN and reconstructive surgery, that in the U.S. many have access to this option.
    While this continues to be a long and intense chapter for you, I pray the upcoming surgery will be the last page, and one which allows you to begin a new and pain free chapter.
    Godspeed Freddie,

  2. mosswood

    You are a thoughtful and strong man who has continued to work Internationally in the midst of the unthinkable. You are no wimp. We always hear ourselves so please use your self ‘air-time’ as I know you can. It must be frightening. So many of us are sending power thoughts and prayers your way. Your intelligence is a blessing since you understand so well. Your intelligence is a curse since you understand we well. You are sailing through rough seas but you, Sir, are a good Captain.

  3. Anonymous

    Fred: May this saga soon end with an encouraging prognosis from your team of specialists. Your strength and stamina clearly align in your favor, but it makes the procedure no less daunting. I enjoyed the two video clips and continue to marvel at your work schedule, the international travel regimen, and your perspective on all this as chronicled with such provocative posts. You remain in my thoughts an in my prayers. You are a true warrior and my hero. Luv ya mon, swjr


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