Here’s the good news: I’m doing better.
The new chemo seems to be agreeing with my body fairly well, and thus far I’m not experiencing any side effect that’s too harsh. As far as starts go, this is as good of a start as I could have hoped for after hearing from the doctor that my previous treatment was doing more harm than good. The hope is this is a sign of better things to come—increased strength, reduced swelling, no more water retention, greater mobility, and cancer that responds well to the new meds.
Here’s the challenging news: better is relative.
It’s not like I’m leaping over the sofa or dancing with Rachel in the kitchen. In fact, she and I had a long talk the other day where I confessed that I’d kind of given up on doing things for myself. I was justifying my lethargy with my shortness of breath and overall tiredness, and I was taking advantage of her kindness by asking her to do things I should’ve been doing myself.
Self-pity is a sneaky little beast.
I do still need a lot of help. For instance, Rachel has to bathe me now. I can’t stand in the shower without fear of falling, I have to hold a towel over the site of my PleurX drain to make sure the bandages don’t get wet, and I honestly get tired just from that level of exertion.
I used to LOVE long, warm showers, and now I sit in a plastic chair and let her gently pat me with a soapy cloth because she can’t scrub or use an exfoliating cloth due to my skin being red, irritated, and cracked.
It’s not the most private way to clean yourself, it’s a whole lot of hassle (especially for Rachel), and by the time it’s all done I need to collapse into a comfortable chair and catch my breath for several minutes.
When you react to a sponge bath the way some people react to running a half-marathon, that’s never easy.
But then there’s more good news: the PleurX drain is doing its job like a champ.
We’ve spoken with the doctor and are now draining EVERY DAY, up to 1,000mL, and let me tell you—it’s like having someone wave a magic wand over me. Immediately I can eat more, breathe easier, and sleep a bit better1 than when I’m carrying that fluid inside of me. The drain is a game changer.
Except it comes with challenges too: there’s a constant fear of infection around the tube that pokes out of my belly, and we have to use a completely new, sterile kit each time we drain.
There is no reduce, reuse, or recycle in the world of American medicine, so we have to keep an eye on the supplies so we know when to order new ones. And that proves challenging because there are so many supplies that came in so fast we didn’t have time to get properly organized.
Rachel has spent so much of this weekend trying to bring some organization to the medical mess that she’s barely had time to sit down and think. An exhausted Rachel isn’t good for anyone, but especially her. She needs time to breathe, think, reflect, and daydream just like anyone else.
Her needs don’t go away just because she’s taking care of me.
By now you’ve caught on to why I titled this post Ups and Downs—because that’s our life right now. Not just circumstantially, but emotionally, mentally, and (for me, at least) literally. It’s hard to embrace the idea that getting up and down physically as much as I possibly can is good for my body. Especially when it seems to make the skin on my swollen legs break open and seep out fluid.2
Or makes me feel so winded my movements are basically from a chair in one room to another chair in another room because I need to sit down after X minutes of shuffling around.
So it just seems easier (and maybe safer) for me to just sit in one place. No baths. No shuffling around. No struggling to roll myself out of a chair and into a standing position.
You can see how quickly one can convince one’s self to just stay down.
Except that defeats the purpose of everything else we’re doing. What’s the point of switching chemo if I’m just going to give up?
Why bother with doing anything if I’m simply going to spend my time sitting in one place, just waiting for whatever to happen?
Come to think of it, that’s a pretty valuable question for you to consider as well. Why do you decide to fight if you know you’re only going to give up in the end? It’s a far better thing to just lie down and let fate or chance or the universe to do whatever it’s going to do. Fighting just seems silly.
It’s why so few people keep New Year’s Resolutions. Or go back to school to finish that degree you started all those years go. Or push for the promotion they know they have earned at work.
So many people have decided that it’s easier to manage a life lived exclusively in the downs because there’s no oscillating; there’s no bouncing from good to bad to high to low to happy to sad to hopeful to doubting.
There’s just a calm, cool detachment that says, “It is what it is.”
I can’t think of a worse philosophy to live by. And trust me, I know what I’m talking about.
It drives Rachel crazy whenever she hears me say, “It is what it is.” To her, it’s defeatist; it’s a loser mentality that I embraced for too long. I always viewed it as cold, stoic pragmatism, but I’ve come around to her way of thinking.
Nothing just “is what it is”—we have the capacity and blessing to be able to influence and shape the events of our lives, if only by adjusting our attitude.
I wouldn’t have believed that a few years ago, but I’ll be damned if it doesn’t really work.
I’ve seen it firsthand through my daily practice of gratitude, but more importantly I’ve seen it work in Ella’s life at school and at dance. I can’t tell you the number of times Ella has presented a situation where she seemingly had limited options, and simply by choosing to change her attitude—to look for what’s good in the situation rather than be overwhelmed by the negative details she was first locked in on—changed the entire thing to her favor.
It’s one of the best skill sets we’ve taught her, because now that we’re slap in the middle of high school, it gets used a lot.3 If I’d been skilled in this practice, my high school years would’ve been considerably different as well.
Of course, we do need to guard against the opposite of living exclusively in the downs, which is living only in the ups.
Or at least pretending that life is always on the up, anyway.
Nobody’s life is good all the time, which is why people take such a keen dislike to people who never seem to have a worry or problem. There’s an inherent dishonesty we feel whenever someone presents their life as never having problems, as opposed to people who own their problems but choose to see the opportunity or good within them.4
We don’t like being lied to, sure, but it cuts closer to the truth to say that we don’t like someone else even pretending to live a life free of suffering when ours seems to have its fair share (or, in some cases, more than that). We don’t want to believe that we somehow missed out on the magic life lottery. Maybe that’s why people pretend to live unburdened by pain or the downs; they want to stand apart, be separate from everyone else, to rise above average.
The truth is, you rise above average by accepting the difficulties and working through them with a positive life stance; you don’t pretend like you skate through life untouched by hardship.
That doesn’t set you apart as an example to be admired; it sets you apart as a phony to be avoided.
And loneliness is its own special kind of down.5
Choosing to live life in the ups and downs is hard, especially when the other two options seem to offer a little less pain to experience. But that’s only on the front end. The longer you live in either the ups or the downs, the more alienated and disconnected you become from yourself and the people who would love you and protect you. By choosing to live with both, you pay a little more upfront, but once the lessons are acquired, they need only be refreshed from time to time.
So Rachel and I choose to live in the ups and downs, and teach Ella and Jon to do the same. We press on, believing that better days and moments are ahead, and looking for the best of the moments we find ourselves in today.
It’s how you make the best out of life.
Prayer Requests:
Jason—for blood work to come back healthy on Wednesday; for zero side effects from my Covid booster on Wednesday; for the chemo treatment to remain gentle in terms of side effects; for the chemo treatment to prove effective against the cancer; for the strength to continue choosing to look for what’s good in whatever situation I’m in.
Rachel—for continued strength and stamina to serve as caretaker to me and mom to the kids; for her to be able to cultivate time for reflection and personal investment; for strength to see what is good in whatever situation she or the family are in; for her fears and doubts to be calmed by God.
Ella—for continued wisdom in navigating teenaged friendships; for strength and stamina as she shoulders a heavy ballet workload in addition to her high-level school classes; for her to consistently get a good night’s sleep; for insight into what she wants to look for in a college and career.
Jon—for continued discipline in his schoolwork and homework; for him to have wisdom and discernment in peer friendships; for the continued development of his personal interests, skills and hobbies; for him to hold on to his kind and Jesus-like disposition, even as he wrestles with questions about Christianity as he learned it in the churches where he grew up.
I’m combining my final thought with my usual “Click here to share!” advertisement because over the past several days, I’ve gotten quite a few messages from people with whom I’m not personally acquainted that felt compelled to reach out and thank me for this newsletter. The messages have come through Twitter, email, LinkedIn, and Facebook, and they’ve always landed at a good time for my soul.
What they all had in common was that someone they knew—a family member, friend, co-worker—passed along at least one issue of the newsletter for them to read and they were blessed by the subject I covered. Some said it rekindled their hope; others said it helped them heal from an old wound. Many became subscribers; and for others, it was just a touch from the universe or the hand of God at the needed time.
Regardless of how they came across this little publication, I want to thank those of you who have shared any or all of these missives with the intent of blessing others. That’s what we’re supposed to do, after all: help our fellow humans on the road of life.
So if you’d like to share this newsletter with someone, for whatever reason, then feel free to do so by clicking the button below.
Thank you for sharing my writing with people in need, and thanks—as always—for reading it yourself. It means a lot to know that you care so deeply for so many.
Until the next issue, look for the good. It’s there to be found.
Best,
Jason
Again, better is a relative term. I’ve still not found the eight combination for successfully sleeping several hours in my own bed. I spent last night on the couch, just because I knew I would be able to catch some Zs. But I still fell asleep watching church this morning; now I know what it feels like to be the one falling asleep during the sermon, as opposed to how it feels putting people to sleep with the sermon. It’s an interesting experience.
A condition the doctors said was normal. It’s managed by elevating my feet, moving around hourly, and being gentle when I bathe—no exfoliating, no scrubbing, no wiping motions (back and forth, circular, or otherwise) and the slightest amount of non-scented, non-medicinal lotion gently applied to the affected areas on my legs, which is mostly on my lower leg, between the ankle and knee. Also, the best way to cleanse me is to simply pour warm soapy water on my body and then air drying. That sounds simple enough except I can’t step into our bathtub (literally can’t get my leg high enough to step over the side and into the basin—God only knows how I’d get out if I were successful in getting in), so when Rachel pours the water on my legs, most of it ends up on the tile floor making it slippery and dangerous for me to stand, not to mention making a helluva mess for her to clean up later on.
Not that the lesson is a one-and-done affair. We have to constantly remind Ella to “change [her] attitude” whenever the moodiness threatens to get too out of control—which, with a teenaged girl, is often. I’m sure some of you can either relate to or remember well the kind of moodiness I’m talking about,
We almost instinctively know the difference, don’t we?
Do you know the difference between being alone and being lonely? Being alone is a personal choice to stand apart for a moment; loneliness is a choice to separate yourself long-term from common human experiences that might otherwise produce deep relational bonds. It’s okay to be alone sometimes; but loneliness is always, ALWAYS a dangerous proposition—no matter how cool some of our movies and entertainment may portray the notion. People are made for community, so we must always be careful to return to our people and touch base, if only for sanity’s sake.