I got a call a while back asking if I could be on a radio show to talk about living with a terminal disease. Fortunately for the radio listening public, I had another obligation and couldn’t make it.
But it’s made me think, again, about leukemia. Not that I don’t think about it every day in one way or another. But now, finally, I’ve decided I spend too much of my living moments thinking about dying. Mortality does take on a different dimension when you really realize it’s not all it’s cracked up to be. But it’s not worth fretting over.
Everyone knows, I think, that we are not getting out alive, but any time the subject comes up someone is bound to say “well who knows, I could get hit by a bus walking across the street to lunch.” Like one day their bus is going to come in.
Ever notice that it’s always a bus? No one ever speculates about getting hit by a car, perhaps because that’s more probable. And no one really expects to get hit by a bus on their way to lunch, no matter what they say. Odds are, they’re right, they’ll live to order lunch. Odds are better that a car might take them out, so let’s not talk about that.
Me, though. I look both ways and cross the street anyway, quickly. I think when you’re really resigned to it, you don’t look first. You just go to lunch. And I’ve been doing that for awhile. Figuring that it was just a matter of time before I didn’t make it to lunch. I might have been right, but now, I’ve quit planning for an early retirement.
I’ve told my doctor and his study director that I want to sign up for a clinical trial. This has been looming now for some long time. Probably not as long as it seems. But the last several appointments have all ended with the admonition to come back in three months and talk about a treatment plan. So this time, when we went for my appointment we really thought he would want to talk about a treatment plan. Instead, he hedged and said there was no rush but that things were certainly moving in that direction and we would have to think about treatment sooner rather than later.
We had talked about it and had a pretty good idea of what we wanted to do. Is there any reason not to wait? Will it be any easier or more effective if I’m older and sick? If anything, it seems like the right time for it now. My symptoms are negligible and I’m feeling good so it seems reasonable to think I can withstand whatever they throw at me.
It’s odd isn’t it, with cancer. For so many people, the cure is worse than the disease. Until it isn’t, of course. And for me, it’s not a cure. At least not as far as they know. No one has been cured yet, but that carrot keeps dangling out on the end of the needle that maybe this treatment, maybe this pill, maybe this combination of god-awful shit will be the one that actually is the silver bullet. So let’s give it a whirl.
It’s an experimental drug, of course, or it wouldn’t be a clinical trial. (We never called them clinical trials when we experimented with drugs in college, but those were simpler times). And just for good measure they’ve decided to combine it with an approved drug to see what the two of them will do together. Each of them seems to work pretty well by itself so far, so maybe if we mix them up with just a pinch of eye of newt we’ll come up with something really wickedly good.
Now, here’s the thing. If you look it up on Google, you’ll find that three people died in the early trials of this experimental drug. Seems it worked so well, so many leukemia cells were killed, lymph nodes tumors shrunk so much that it overwhelmed their systems. But they figured out how to deal with that and have solved it. So let’s not talk about that either.
For most people, and everyone since they adjusted the dosage, it’s worked and many of them have no evidence of disease at all. It’s the very definition of the adage that what doesn’t kill you makes you stronger. And since I’m pretty healthy for a sick guy, I ought to come out on top, right? Right?
It’s going to be a month or so before I start. And it’s not a sure thing that I’ll be accepted. There will be another bone marrow biopsy and a CT scan and a medical history and some other tests. I’m hoping the entrance exam has an essay question. I hate multiple choice. If I score in the upper percentiles in all those, I get to take a pill. Every day for two years or so. And once a month, for six months, I go in for an infusion for a day. Easy. Except for the side effects, most of which have been observed in dogs and mice so far. So if I start scratching behind my ear you’ll know I’m in treatment and you may not want to suggest that we go to lunch.
Lee:
: thanks for your note I always appreciate hearing from you and what’s going on. I’m in Melrose Scotland right now with a screwed up back in a hotel for five days.. Taking drugs trying to get better I was supposed to be walking for eight weeks instead I’m stuck in a bar with great whiskey and lots of wonderful beers on tap tap. But I’m starting to get better.
One of the first things that came to mind after reading your note is what of life is a placebo. Forget about buses and cars and all the rest of that crap but life could just be a placebo, lots of gray zones lots of maybes. I’m I’m with you on this journey. There was never any cure for the disease I have either. So I just been a walking zombie always knowing there’s no Silver bullet, not knowing when the end is coming and just going for the gusto. Drink more good whiskey. Walk on the beach barefoot more often. Keep your dry sense of humor and keep bringing that joy into everyone’s life when you use it. Thinking of you as always, Ron.
One of your best pieces ever Lee. Very thoughtful, insightful, and brave. I sure hope that this turns out to be the miracle for which we are all looking. Best of results (vs luck)!
Lee….Your courage and sense of humor never seem to fail you. A wonderful piece of writing, of course, but even more an insightful view of the challenges you face. You will lick this. So many people are pulling for you.
as long as you don’t start humping people’s legs… if that happens, tell them to back off the dosage a little….
Laughter is great medicine, Leo. Do you mind if I add a dose of prayer? Asking for and expecting a cure, dear friend!
Lee, thanks so much for this entry! I, too, love your humor. I have a friend who has the “bad” kind of leukemia — I can never remember the name, but all the people who were in his “class” of treatment early on died a long time ago –, but with his attitude and insistence on living he’s survived more than 15 years, far longer than anyone expected, and he has no intention of leaving his wife and dog any time soon. So, please decide to live. We need you here — and I want more doses of your quizzical variety of humor. Nicole
Leo,
It’s so hard to believe your even a little sick your writing as always is superb and it’s the thing that is going to pull you through this challenge and we’ve got our prayers headed your way, our best always, Alicia & Bob
You are a great writer. With your sense of humor and desire to live you will make it through the treatment. My prayers are always with you. Your favorite mother-in-law, Alyce
You are a great writer. With your sense of humor and desire to live, you will make it through the treatment. My prayers are always with you. Your favorite mother-in-law, Alyce
Leo-A-Go-Go Thanks for the update. Hoping that combination of ‘GAS’ will work. We are pulling for you.