I’ve been putting off writing this post since Christmas. That’s when I asked that question.
So friends (deep breath), it’s time to say this:
it seems I’m fighting a killer, a deadly disease.
Some of you are nodding to yourselves, saying “I’ve thought as much…”
Others of you are quite surprised. Go ahead and take a moment. (Trust me, I’ve been trying for weeks to get used to this.)
I’ve started to write it and gotten bogged down in how much do I need to include to still consider it being honest—and when have I glossed over things in a way that ends up telling something less than the truth. And of course, how much do I leave out so as not to bog you down with more details than you could possibly be interested in…
There’s also the feeling (the fear?) that if I commit all this to writing, it somehow changes things—something becomes irrevocable. And so it goes in the mental trash bin until the next time I take a run at it.
But I saw this today and it absolutely wrecked me. And it reminds me that time is passing and I should get on with what living I have to do.
My doctors have chased diagnosis after diagnosis, each getting more and more rare. This is the expert medical team who handles rare neurological cases for the military (TV watchers can think House) and the head doc tells me they’re used to mysteries and this is befuddling them.
We’re now into the 2 or 3 cases per million and my very honest doc is still shaking his head. (I’m grateful for their honesty. It makes things easier for the most part...) There’s still an “if they’re right” in there but it’s gotten extremely small.
The treatments I’m taking are intense, exhausting affairs, toxic in their own way. Each one costs me life expectancy but the theory is that they’re knocking away at the disease in a way that has a net increase on my life expectancy.
The first treatment (last fall) was thought to be kind of an “if this doesn’t work, nothing will” silver bullet cure.
It tore me up. “Go ahead and kill me—just don’t ask me to move” migraines, vomiting, getting weaker and weaker. I missed Thanksgiving, Christmas, New Year’s, four family birthdays… After three months we had to stop. I was getting worse instead of better.
There was the delay to figure out what to try next which is what we’re trying now. Started that at the beginning of March…
But I met with my internist this week and he’s concerned. He thinks I should already be showing improvement—I’m not—and he’s not at all happy about the side effects he is seeing. He’s raising his concerns with the neuro folks. I meet with them this week. And I’m scheduled to have another high-dose (really overdose) steroid infusion…
Last weekend, there seemed to be a real “Angel of Death”-over-the-house feeling lurking about. Maybe you have to understand that my disease has been more chronic—very steady without many huge events—but last week I had a legendary bad night.
And there was nothing anyone could do.
I haven’t driven since August. I’ve used a wheelchair since New Year’s. I’ve got that ever helpful “hey, look—a squirrel” ability to stay focused. A big evening out means a DVD in the living room with the family.
My pain is getting worse—the pain meds are wearing off sooner and the pain is breaking through more often. I have trouble seeing. I’m showing muscle wasting again. I sweat constantly. There are other ills you don’t even want to know about.
I’m not resting (again). Or, like yesterday, I’m sleeping 15 hours out of sheer exhaustion. People say, “At least you’re resting. That has to be good!” but it’s not normal to sleep 15 hours at a run. That just means you’re really sick. And if the pattern holds I’ll probably not sleep tonight. I’m feeling another down-cycle beginning…
All that said, this is the best time of my life.
God is still God.
He is still in control, watching over us, caring for us, providing for us…
I wouldn’t trade this time with my family for anything. The strength and faith I’ve seen in them and the people around us have been amazing. For the last year and a half, I’ve had a front row seat, seeing God at work, up-close.
Like the guy in the video (do go watch it), I feel like I’m a better husband, father and friend. I feel closer to God. More confident to touch others.
I want to live to walk my girls, all five of them, down the aisle.
I want to see my boy become a man.
I want to grow old with this wonderful wife that God’s given me.
My bucket list is long. There’s a lot I’d still like to do. I don’t feel done. “Like anybody, I would like to live a long life. Longevity has its place.” But it’s become very clear that it’s out of my hands.
The doctors don’t know enough to talk percentages or timelines should none of these treatments take hold (I’ve asked.) The fact is that the broad category diagnosis was a flat-out death sentence before they started using these treatments. The most likely to help has failed. And as I said, questions are being raised about the next most likely. As the airline passenger said to his seatmate, we’re running out of engines fast!
I’m praying, and I know many of you are, for God to heal me. But the truth is none of us knows what happens next.
But I know God is still God.
(And I’ll keep y’all posted.)
PS: I’ve talked this over with my older girls. We’re trying to figure out how to talk this over with the middle daughter. She’s plain freaked. The younger two girls are acting as if they know something’s up and the boy’s just one – he’s too busy getting into things.
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