Lost in the Woods

A lot’s happened since my last post, so I’m afraid this one’s gonna have to be heavy on update and light on fun. If you skim or skip at any point, please dip back in for the note at the very bottom of the post …

Over the past six weeks, I’ve had a full spine MRI, a head-to-toe bone scan, and a CT with contrast of my chest/abdomen/pelvis – basically, we’ve left no stone unturned. Here’s the scorecard …

• Bones: tumors in my skull, right shoulder, multiple ribs, most of the vertebrae from the mid-spine down to my tail bone, pelvis/hips, and my left femur
• Lungs: same bunch of tumors
• “Floaters” (that’s what I call the tumors that are in my chest but outside the lungs): five or six … a few growing under my sternum where the original thymoma was, one in the space between my lung and muscle wall, the old one in the fat lining my heart, etc.
• Liver: got one there now, too

I think that’s it. It’s kinda funny (is it really, Joe?) when there’s enough that you actually have to stop and think if you’re remembering everything. Okay, I’m gonna say it for you: it doesn’t sound so great when you list it all out on paper like that. It may be a bit cloudy at the moment, but the sky’s not falling … here’s my take on things:

• I must admit, the bone stuff is a pain in the ass (literally speaking, in the case of the lower spine tumors). I may not be hitting the squat rack or pulling a weighted sled again anytime soon, I’m not sure about my adventure racing future (who wants to race with a guy whose bones might disintegrate out in the middle of the woods?), and I guess I’ll have to stop slapping myself on the helmet for motivation when I’m dragging on the bike (skull’s a little tender). But I am still getting on the bike, and you know I can still play a mean game of pickleball, so all is not lost.
• The lung stuff is pretty much stable. Honestly, I would say my VO2 Max is probably higher now than it was five years ago. It was just a couple months ago that I crushed my PR and had my best single riding week since being diagnosed back in 2020. I did the PR course yesterday, and while I’m way off the record at the moment, I can still knock off a respectable time – a pretty good time, in fact, considering I’m four rounds deep into chemo again. It might also help my times if I’d stop eating boxes of Whoppers and Hot Tamales at night (damn those giant candy box bins near the checkout at Walgreens).
• The floaters … some of these are old news (I’ve known about them for a while), some are new news, but they’ve actually been there – they’ve just recently been picked up by the radiologists because they’ve grown or because I’ve had more detailed scans done … or, because past radiologists have just missed them …
• The liver? Yeah, that’s a bummer because that’s another major organ involved. But here’s the thing: my past scans stopped at the top part of the liver (they focused on the lungs) and haven’t been with contrast … basically the liver tumor might have been there previously (if a little smaller), but we just didn’t know about it. Also, at the moment, it’s just one tumor, and it’s relatively small …
• How am I actually doing??? Most days, I feel pretty good … maybe some fatigue from the chemo. Friday, I went to the office for the day, then met an old buddy (that’s you Pettit) for a beer, then went to Graber’s football game. Saturday, I got up, put in a hard ride, then mowed for a few hours, etc. Pretty normal stuff. Other days my body hurts – mostly my back and sides (like a very large, very mean person keeps sucker-punching me in the ribs). Yes, pain can get in the way of “pretty normal stuff.” Pain is something I’m going to have to reach some kind of arrangement with … I’m not a big pill guy, so I’m trying to stick to just Advil and maybe an occasional 1/2 Tramadol for now … but we’ll see.

Right now, my biggest challenge is figuring out what to do next. I was supposed to get ten straight days of radiation on my spine beginning this past Monday, but in a last-second change of plans (I was actually in a gown, about to get onto the table) we called an audible. It’s a crazy story, but between the radiation doctor, one of my oncologists, and the radiologist that wrote up my latest scan reports, the ever-changing consensus was that the chemo I’m currently on might actually be stabilizing the spine tumors … so instead of getting radiation, I changed clothes, and C and I went and got smoothies. This little story is representative of how utterly “lost in the woods” we are with regards to figuring out what to do. It’s the same old set of problems … super rare cancer behaving in a unique way, no approved drugs for this cancer, no standard protocol for the doctors to follow, and a fair amount of spread.

Which tumors are a priority? Can/should we go after specific ones with surgery or radiation? Is this the right chemo, or should we try something else? There are a few clinical trials I’m eligible for at the National Cancer Institute and one opening up at Georgetown – should we try one? Anyway, as fate would have it, I’m fairly comfortable being lost in the woods … over the next several weeks, I will have more appointments, ask a thousand questions, and we will come up with yet another plan. As for switching chemo or trying a clinical trial, in the end, it will be a risk/reward decision … how much risk (as in serious toxicity) am I willing to take on for a chance at some real reward (as in actually shrinking or eliminating some of the tumors). My gut tells me we’re likely to go on the offensive and try to take back some ground, sooner rather than later. I will be ready when that happens.

A story before we wrap up … When Graber’s knee went haywire five days before the first game of the season this, his senior, year, I was at a loss. He’d worked so hard all off-season, was stronger than ever, and had a great summer camp and pre-season. Then he steps out of the pool one day and says, “Hey man, I can’t straighten my leg.” What??? In the chaotic days that followed, I just couldn’t wrap my head around it. I can’t turn off the logical, analytical side of my brain, but I’m also a pretty imaginative guy. But no matter how much I analyzed things, and how much I let my imaginative powers run free, I couldn’t come up with a scenario where it was something simple, some scenario where it would all be okay. Yet, somewhere along the way, during the conversations I was having with God, despite my being at a complete loss, I began feeling that it would indeed be okay. Whenever I’d start disaster-thinking, I would find myself saying out loud, “Nope. I know it will be okay. I know You won’t let this be taken away from him again, after all he’s done to get back here.” This wasn’t even a prayer at that point, and it certainly wasn’t some kind of demand. I just knew it would be alright, even though I couldn’t exactly imagine how. Next thing I know, his surgeon is pointing at a white line on the Xray of his knee and telling us it’s a broken screw floating around in there. The knee itself is fine. Surgery the next day, three weeks of pain, swelling, and rehab, and boom, he’s cleared to play. He hasn’t missed a beat since and watching him chase down quarterbacks the past five Friday nights … man, it has filled my heart.

I tell you this story because for the first time in my life, I accept that I don’t have to be able to imagine a logical scenario where everything will be okay, let alone figure it all out myself. Let me be clear, this is not to say things will always be okay – I’m not naïve. But they can be. It’s possible. Anything is possible. I believe … I know, with absolute certainty, that I could wake up tomorrow and not have a single bit of cancer in my body, if that’s what God chooses. No, it’s not likely. That scenario would utterly defy not just the logical, analytical side of my brain, but also the messy, imperfect world we inhabit. But it absolutely is possible. The only way I can articulate it is to say, maybe for the first time in my life, my faith is complete. It ain’t perfect, but it’s complete. God’s plan for me will unfold. In the meantime, I’ll do what he’s designed me to do. I’ll research, study, ask questions, make decisions, endure the treatments, all the while understanding that, in the end, I’m in His hands … and that anything is possible. Knowing that’s good enough for me.

The note I mentioned in the beginning: Some of you follow the blog on my website. Most of you still follow on CaringBridge. It doesn’t matter either way, as the posts are the exact same. Anyway, I just want to take a second to thank you for all the amazing comments you’ve posted over the past three years and to apologize for not ever replying directly. This is only because, honestly, sometimes writing the posts takes a lot out of me, and it’s hard for me to keep living in that “cancer headspace” once I get a post out, if that makes sense. But I do read every single one of your comments, and I can’t begin to tell you how much comfort they bring me. A special shoutout to all the folks I’ve lost touch with over the years that have taken the time to follow along on this journey and engage … all you Lambda Chi brothers, childhood friends, extended family, friend of friends, etc. – thank you all for your inspiring words of love and support.

Hopefully next time will be a little lighter on the update and a little heavier on the movie quotes … until then, peace out!