Over the last three years, this blog has received quite a bit of web traffic on a topic I’d really rather not know much about… cholesteatoma. For those of you who have no idea what that word even means, let me fill you in.
According to wikipedia, cholesteatoma is:
a destructive and expanding growth consisting of keratinizing squamous epithelium in the middle ear and/or mastoid process.
I’m sure that really helped.
Basically, a cholesteatoma is a tumor that grows inside your ears. It’s not cancerous, but can be life-threatening if untreated. Basically, it’s a tumorous skin growth. As it grows, it funnels infection to the middle ear. Over time, the infections degrade the bones of the middle ear and adversely affect hearing. The tumor itself can spread throughout the mastoid bone (located behind the ear)… if left untreated, the infection can actually spread through the thin lining of bone between the middle ear and into the brain.
So yes. It can be a big deal.
In my case, we’ve been fortunate. We discovered my first cholesteatoma in 2008, in my left ear. I’d had a major ear infection, ruptured the ear drum, and after a few weeks of medical treatments, discovered the cholesteatoma. Two surgeries later, I was cholesteatoma free, but left with hearing loss as a result.
I should be thankful it’s just that.
Today, though… I’m not. I’m having a really rough day. You see, I’ve been battling chronic ear infections in my right ear over the past two years. As part of a routine follow-up visit regarding my original cholesteatoma, I had my doctor look at the issue again. My thought? Just a little hearing loss… wasn’t even thinking about anything more.
His response? Well, after a thorough examination, it included words that shook up my world again… “indicative of cholesteatoma”.
Recap? Left ear… cholesteatoma in 2008. Surgically repaired to a “new normal” in 2009. Right ear… potential cholesteatoma.
Simply put, this sucks.
I know it’s POTENTIAL cholesteatoma. And having been through this once, I know it’s not the end of the world. But my mind has been racing nonetheless, and my emotions a bit of a mess today. The idea that I may no longer have a good ear. The thought of degraded hearing in both ears. The likelihood that hearing aids will be my only hope of “normal” hearing at some point.
It’s a crushing blow in a lot of ways. Even knowing nothing has been confirmed, and that cholesteatoma may not really be a reality for me again.
Nevertheless, my normal optimism has been gone today. I’m trying to prepare myself for the worst case. I’m trying to come to terms with the possibilities. I’m trying to swallow (once again), a simple fact of life.
… that we don’t always get what we want.
As a follower of Christ, I know that fact. Life isn’t about us. We don’t always get our way. God doesn’t give us life, with all of its ups and downs, for OUR benefit.
We exist for His purposes and pleasure, and our lives should be lived to bring glory to Him.
And I’m okay with that, except when I’m not (how’s that for deep).
I’m human. Full of emotions. Hurts. Pains. Questions. Selfishness. My own desires and wants and wishes.
I question why. I struggle with the possibilities. I wonder if it’s all really going to be alright.
Even though I know (and believe) better.
The “Christian” response to times like this is to quote Scripture. Real comforting ones like Romans 8:28:
And we know that in all things God works for the good of those who love him, who have been called according to his purpose.
And then we beat ourselves up because we DON’T feel at peace with things.
I guess my point in writing all of this is to let you, who may be finding your way to my site because you’re dealing with cholesteatoma, or you, who may be struggling mightily with something else entirely… it’s to let you know this:
EVERY Christian struggles with worries, fears, and doubts. If any Christian you know tells you otherwise, they’re flat out lying.
And know that this fact does NOT negate the truth of Scripture.
Our doubts, worries, and fears do NOT change the fact that God is in complete control.
Our doubts, worries, and fears do NOT change the fact of His love for us.
Our doubts, worries, and fears do NOT change the fact that He is still working for our good.
God is STILL there.
So today, if you’re struggling… quit beating yourself up.
And today, if someone comes to you with their hurts and pains… don’t be trite with your responses.
In both cases, the goal is a Scriptural one… to cast your anxieties upon Christ, because He cares for you. There’s no one else that can truly bring us peace.
—————————————————-
For more readings on my battle with cholesteatoma, check out these posts:
- “When You Visit the Doctor…”, October 2008
- “Unknowns”, November 2008
- “Life Update”, November 2008
- “Surgery Update”, December 2008
- “Cholesteatoma Update”, March 2009
- “Cholesteatoma Surgery, Round 2”, December 2009
- “We Don’t Always Get What We Want”, November 2012
- “Cholesteatoma… Again.”, November 2012
- “I Am a Bad Man…”, December 2012
- “Bionic Hearing”, December 2012
- “Cholesteatoma Survivors”, November 2013
- “Annual Reality Check”, January 2014
Also… if you want to connect with me and others battling cholesteatoma? Check out this Facebook page for “Cholesteatoma Survivors”.
I have had a couple of cardiac catheterizations. You know .. where they stick a wire through a hole in your thigh and run it through your torso and up into your heart and pump some dye in there, meanwhile checking you out with full-body X-ray, aided by the dye.
On my first one, they didn’t shoot quite enough juice into me, and I could feel the doctor’s hand rubbing against my leg as it rammed the coaxial cable (or whatever) in there. I also heard him ask for a #2 stent.
I mentioned that to him some time later, and I was totally zonked out during the second one.
But guess what … the lead-in, the build-up, the anticipation of the procedure was ten times worse than the experience. It was simply a non-event. In fact, the second time around, not only did I not know anything during, but after I only had to lie still one hour instead of 12 (the first time), owing to a new closure device/procedure.
Said all that to say this: I got hearing aids last December. If it comes to that, it is absolutely no deal at all. In fact, I guarantee you that, if it does, you’ll wonder why you didn’t get one for your bad ear at first loss of hearing.
I got the outside-the-ear kind, got them at Costco, half anybody else’s price, and nobody ever even notices, they’re so inconspicuous.
Take that concern off your calendar. You got plenty of other junk to worry about, like being handsome now and you’re probably going to get ugly when you get old.
🙂
Thanks for the dose of perspective, Bob… I think. Not sure I needed the whole getting ugly when I’m old thing. 🙂
Anyway, I wrote this post roughly five hours post-visit, and yes… I was still a bit of a mess. Much less than the immediate hour or two aftewards, but still not great.
I’m doing fine now. I’ve been down this road before… did perfectly fine with surgery, recovery, etc. So I know the worst case isn’t bad by any means.
It’s just not what I really wanted, and that’s generally the hardest part of anything like this. This post was as much venting and getting feelings off my chest as it was about me really being worked up long-term about this. The short-term emotions are always worst… the “I don’t want this”. The “this isn’t fair”. The “why?”. The “is this really happening?”.
Ultimately, I hope this post comes as encouragement to others going through stuff they just didn’t ask for. I get a lot of traffic to this site over cholesteatoma, and know that many going down this road have a lot of doubts and fears. And that’s okay.
First message to them? Well, it’s really not that big of a deal. The end result of cholesteatoma just isn’t that bad, treated properly. They can see that through my other posts on the topic, which were all written further down the road in the process. This post is for those people who are right where I was when I wrote it… just a short time after the news.
More imporantly, though? Short of a reliance on Christ, I don’t know how anyone copes with anything difficult in life, even with something that ultimately is as minor as this. Only the knowledge that a loving God is in complete control can EVER really bring us peace. I would hope that people smack dab in the middle of a struggle like this would consider turning to Him for peace!
Anyway, thanks again for sharing. Always appreciate what you have to say!
God does give grace to cope, and prosper in attitude, too, if one want it.
Seriously, He does.
I had prostate cancer in 2008. Could have had radiation implants but the only church friend who’d had PC too had that done, and it came back. So I told the doctor to take it out, which they did.
Long story short, it’d gotten into a lymph node. Surgeon said hormone treatment .. Lupron .. could stall it for years but I asked him if he’d tell his own dad to get radiation, if he liked his dad. He said yes, he would. So I had radiation .. 39 tomotherapy radiation doses, the only downside being that whatever state of continence you start that with, you’re going to end with. So I still do have some issues with it.
Nothing that cannot be managed. So I made light of it. I told friends I asked the surgeon what kind of underwear I should use after, and he said depends…”. I said “on what” and he said “No … DEPENDS”.
Like I said, God gives grace. He’s got more than we can handle.
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