On Waiting and Farrah

Not much in the way of updates tonight. I’m scheduled to meet with an oncologist at OSU next Wednesday, which is essentially a second opinion, and then next Friday (8/28) I head up to Cleveland for an MRI of the lymph nodes around my tumor. The following Wednesday (9/2) my tumor board will meet and decide my treatment plan, which I’m assuming will kick off with surgery, though chemo might come first.

I’ve been in a weird holding pattern since my exam last Friday, not having much I’m able to do to advance my progress. As I wait, it’s been a struggle between the one voice in my head saying, Hey, things are looking up! Relax and enjoy a few low-key days with your family before shit gets real and the other voice saying Whoa, don’t get too comfortable, buddy. All kinds of things can still go wrong; you SURE you want to relax?

One thing that has helped fill the space and quiet that second voice is reading and hearing stories about people who faced similar diagnoses and beat their cancer to return to a “normal” life. Because colorectal cancer is so preventable — and so treatable — these are fortunately very common, very uplifting stories. In fact, I decided early on that I would only allow myself to read stories with positive outcomes. This decision came after a night spent reading some truly heartbreaking stories of colorectal cancer cases, particularly in younger folks, that did not end well.

Don’t get me wrong; the incredible strength and resilience of these people (here is a great example) is beyond inspiring. I just happen to know my own mind very well. I know the places it’s capable of going. I know what it needs at this particular moment: laser focus on doing my part to execute on the kind of positive outcome the scans and doctors are all pointing to.

All that said, I’ve made an exception for researching Farrah Fawcett because I’m so inspired by how she used her diagnosis to help others, destigmatize anal cancer, and probably save many lives. I won’t claim to be a Farrah expert, and I certainly stopped short (see above reasoning) of watching any of the documentaries about her three-year battle with cancer. But you don’t have to read far to grasp that by publicly sharing her experience, with brutal honesty, the original Charlie’s Angel created enormous awareness around a form of cancer that is both rare (8,590 estimated new anal cancer cases in the U.S. in 2020, compared to 147,950 for colorectal cancer) and often viewed quite incorrectly as caused only by sexual promiscuity (placing it among what are sadly considered the most “embarrassing” or “shameful” cancers).

Farrah shared her story generously and selflessly — largely, it seems, in hopes that as a society, we could start to get over our general embarrassment about butts and poop, and move on to far more important things like detection, prevention, treatment, and research. After all, you can’t cure what you can’t talk about. The great news is, your strange butt symptom (or any strange symptom, for that matter) is probably nothing to worry about. But why not enjoy the peace of mind of letting your doctor decide that?

How I’m Changing My Diet

It seems pretty unclear whether or not diet has conclusively, definitively been proven to cause or prevent colorectal cancer. But it also seems like a lot of smart people believe that there’s certainly some kind of association between what you put in your body and your likelihood of developing cancer in your colon or rectum. Even if we don’t totally understand it yet, your colorectal health might just be a microcosm of your overall health.

The way I see it, I’d be nuts not to make some changes to both what and how I eat. If everyone is wrong and these changes are all based on fiction? Well, then, I guess my risk of recurrence stays flat and I just get generally much healthier in a bunch of other ways. Works for me. Plus, I have a fairly major surgery coming up here and I want to do everything I can in the next week-plus to be as healthy as possible — physically, mentally, emotionally, spiritually — going into it. Does cramming for an exam work? The teacher in me scoffs, but I’m taking no chances.

This is one time I’m actually glad to be putting something personal on the interwebs, because now — once we’re all hanging out again post-pandemic — my temptation to order a beer, a steak, a mound of fries, and a giant slice of cheesecake will be outweighed by your judgment of me as a pathetically hypocritical (worse, fraudulent) blogger.

(By the way, I won’t judge you for ordering that. I’m the last person to judge anyone for their food choices; we all have our stuff. I just have strong conviction that it’s really, really not smart for me to keep eating like I have been.)

So without further ado, here’s my first round of changes:

  • No more red meat; chicken and fish only, and smaller proportions of those as compared to the rest of the meal
  • No more processed meat (bacon, sausage, cold cuts, etc.)
  • No more fried foods or fast food (sorry, French fries — our love affair has been real)
  • No more candy (I’d pretty much cut this out already anyway)
  • No more coffee, or caffeine other than green tea
  • No more alcohol
  • Generally, WAY more fruits and vegetables
  • Eat slower
  • Eat more frequently
  • Eat less

I’m sure that over time, I’ll refine this. Never having made changes this drastic before (yes, these feel drastic to me!), I have no idea how it’s going to go. But I’m married to a world-class chef who does incredible things with veggies — many of which can be found here — so I like my odds.

And since every new diet loves company: Anyone with me?

Good Luck vs. Bad Luck

Luck is a funny thing, something I’ve been thinking a lot about lately. As I’ve gotten increasingly good news and the road ahead has become a good deal clearer, I’ve noticed my mindset shifting.

Initially I spent a lot of hours feeling sorry for myself, marveling at what I saw as truly rotten, horribly bad luck. I fixated on the notion that the “under 35” demographic barely even registers on the colorectal cancer stat charts. (This is alarming, though: A University of Texas study in 2015 predicted that from 2015 to 2030, nearly one-fourth of rectal cancer diagnoses would be in patients ages 20-34. One in four!)

Sure, my paternal grandfather died of colon cancer, but he was in his 80s, and we’re not aware of anyone else in the family who had it. I’m not obese. I’m not a smoker. And this wasn’t a small polyp; over 10 millimeters in diameter is considered large, and mine was a whopping 40 millimeters (roughly an inch and a half). What are the chances?!

But after my exam yesterday, when my wife was talking to my surgeon (I was still groggily sipping ginger ale), he said something to her that we’ve been talking a lot about since then. She asked him what could have caused this. Was it my questionable diet? My embarrassing speed-eating and overconsumption? Stress? When he replied that it was probably none of those (at least not directly traceably), she said, “So was it just bad luck?” He said, “Sure, you could say it was bad luck; or you could say it was really good luck that we caught it when we did.”

Sounds simple and obvious in retrospect, the kind of corny line you use just to try to cheer someone up. But as I’ve spent more time contemplating how bad this could have been (knocking on wood as I write this, since there remain a few unknowns and not-so-great outcomes technically on the table), I’m starting to see the really powerful truth in the good-luck viewpoint — which I was pretty dismissive of just a week ago.

Sure, I should have shown more urgency in seeking out an answer to why my supposedly fixed fistula was still oozing pus. This cancer should have had like eight fewer months to set up shop in the lining of my rectum. But it could have had another 12 months — or more, depending on how long it would have taken for me to finally show any of the textbook colorectal cancer symptoms. And if that had happened, I’d be having very different discussions right now. It’s still not clear to me whether the fistula and the cancer are at all related, but — as a few insightful people have pointed out — there’s a very real possibility the fistula (which a year ago I was bemoaning as its own stroke of rotten luck) saved my life.

If that’s true, I’d say that’s about as good as luck can get. But maybe the point is that luck is sort of a made-up concept, a construction of our minds. It’s never inherently good or bad; we assign those labels to it ourselves. The only things that are real are the perceptions we create of what happens to us. Fortunately, those we control.

Some Really Good News

Today was a good day. I got the results of the MRI of my liver, and it was confirmed that the spots are benign cysts. Then I had the long-awaited exam under anesthesia, and my surgeon seems optimistic that while the cancer did spread into my rectum from the polyp there (this was the first time he referred to the remaining cancer as a “tumor,” which was a little weird to hear), he thinks it will ultimately be removable such that I’ll need only a temporary — as opposed to permanent — colostomy bag.

Next up: another MRI, this one focused on the lymph nodes near the tumor, which apparently requires a special kind of imaging. Then there’s a meeting of the tumor board (here is a helpful Q&A if, like me, you didn’t realize this was a thing) to finalize the treatment plan, which obviously will include surgery to remove the tumor itself.

Not sure why they didn’t give me a fancy mask with the wire that bends around your nose so your glasses don’t fog. But otherwise the UH team was fantastic.

I was excited to write that personal update, but I’ve been even more excited to report back on the response I’ve gotten to my first few posts. Among the many amazing people who have reached out to send good vibes, no less than six have told me that the blog has inspired them to either have a weird symptom looked at or get a colonoscopy (in most cases due to family history). That’s exactly why I’m doing this.

Well, that’s all for tonight; short and sweet. But first, a big-time shout-out to the MVP of this whole ordeal, my incredible wife Alexis. She’s a million times tougher and more together than I am during normal situations, so you can imagine how superhuman she seems with all this going on.

And I guess Addie deserves a shout-out too, because when I got in the car after the exam, I said, “Addie, do you remember what Daddy had to do at the doctor today?” She replied, “Butt.”

What Have I Been Putting in My Body?

Not much in the way of updates today; had an MRI of my liver tonight, but won’t know the results until tomorrow. I requested Luke Combs in my headset, but the guy used YouTube and after a few songs, it took a weird turn into a repeating loop of “Big Girls Don’t Cry” by Fergie for the last 15-20 minutes. Message received, universe.

Anyway, I’ve been thinking a lot about how I got here. And not “how I got here” in the literal sense, which I tried to outline in my last post, but “how I got here” in terms of my overall health. What caused the cells in my rectum to create this giant cancerous polyp when the rest of me was relatively healthy?

Partially just an unlucky genetic lottery ticket, sure, but the fact is, I’ve come to accept that I really wasn’t that healthy. Now, the last thing I want to do is pretend to be an expert about the causes of colorectal cancer. Diet, stress, genetics, environment — it seems like people generally agree that it’s some combination of these, but it doesn’t seem like anybody really knows. And the alarming increase in cases among younger people doesn’t seem to have a solid explanation yet either.

But when I do some self-reflection and try to take stock of my health with brutal honesty, it’s not great:

  • At 5’10”, 200 pounds, I’m 20 pounds heavier than I should be. When I retired from professional baseball in 2009, I was 205 pounds, but I was in very good shape then. A lot of that was muscle that has long since disappeared. Sure, I’m not obese, I don’t use drugs, I drink alcohol only in moderation, and I can jog five miles without much of a problem, but I’m not in “good shape” by any stretch of the imagination.
  • In my life — particularly throughout my twenties — I’ve eaten a lot of fast food. I’ve been married to a professional chef since 2017, so my diet has improved immeasurably, but I’ve abused the fact that I have a fast metabolism and can generally carry a little extra weight pretty well. I also just have a horrible weakness for (unhealthy relationship with?) fast food, fried food, sweets, etc.
  • I have no respect for portion size.
  • I eat way too fast. Like, wayyy too fast.
  • I allow work to stress me out far too much, and then I allow that stress to fuel all of the above behaviors. I get near food and I lose my cool.

To be clear, I’m not claiming that my relative disregard for diet and exercise (still not terrible on the scale of, say, all Americans) is the cause of my cancer. But it’s pretty hard to think it didn’t contribute somehow, right? Maybe what concerns me most isn’t the behaviors themselves, but the attitude that drove them: I’m young(ish), I look fine(ish), I can eat whatever and do whatever. I’ll get serious about my health once I’ve accomplished a bit more professionally and financially, once I’m in an age range where the statistics get a little more real (so much for that one!).

Today, a good friend sent me these:

I’m excited to check them out. And I’m excited to think about this stuff more, and to use this massive wakeup call to finally prioritize being a healthy human, like I should have been doing the last decade.

How I Got Here

Author’s note: In the spirit of authenticity and candor — and in order for the story to make sense — I have to get pretty real in this post about symptoms and anatomy. If semi-graphic butt stuff if really not your thing, maybe wait for the next post. 🙂

First, I got a bit of good news today: The CT scan results showed a few very small spots on my liver but was otherwise clean. I’m getting an MRI tomorrow to get a closer look at those spots, but it sounds as though small spots like that (essentially too small to analyze with a CT scan) are commonly just benign cysts; we’ll see. Either way, it was a huge relief to rule out what was probably the most terrifying potential result (cancer everywhere).

Ok, so the back story. I’m sharing this because I think there’s a lot to learn for anyone who’s ever had (or will ever have) a weird symptom they didn’t think was a big deal. I certainly don’t mean to sow fear or to send people running to their doctors for every little bump and bruise. But when it comes to colorectal health, the stakes are high and it’s worth the minor inconvenience of a possibly unnecessary checkup if something just ain’t right.

At the end of 2018, I thought I had hemorrhoids. A friend of mine happened to be suffering from hemorrhoids at the same time, so as we commiserated, it was easy to jump to the conclusion that our affliction was shared. I had pain, pressure, and even some weird yellow pus. I still lived in San Francisco at the time, so I went to One Medical (I never had a primary care doctor there) and after taking a look, they sent me on my way with typical over-the-counter hemorrhoid remedies and recommendations: a cream, sitz baths, etc.

After a few months (yes, months; this is where I began a horrible pattern of dragging my feet on simple next steps, essentially neglecting my health because I was “too busy”), I’d had some periods of relief, but in general things weren’t much better, so I went back to One Medical. This time, they said, “Hmm, doesn’t actually look like hemorrhoids. You should see a specialist.” They referred me to a local colorectal surgeon.

By the time I sat down with the surgeon, it was pushing mid-2019. I liked him a lot. Before he examined me, he drew me a diagram explaining how hemorrhoids work, and it made a lot of sense. Then he examined me and said, “Well, this isn’t hemorrhoids. Time for a new drawing.” He sketched and explained what an anal fistula was: basically an abscess that turns into a tunnel through your butt. (Here is a better description.) Finally, an explanation for the pus!

I needed surgery — a fistulectomy — and again in classic foot-dragging style, didn’t actually get it done until August 2019. But it went well, and my surgeon did a great job (it’s evidently somewhat challenging to make sure not to damage the anal sphincter’s delicate muscles). The pain was gone, the pressure was gone — it was amazing!

But the pus wasn’t gone. For whatever reason, I didn’t think much of it. I was so happy to have some relief that I suppose I figured the very minor discomfort of a little lingering pus in your butt was a small price to pay to not be in pain anymore. We moved from California to Ohio, life got crazy, and I procrastinated.

Then finally in December, I happened to be back in SF for work and went to see my surgeon. I explained that I still had the pus problem. He said that sometimes the fistula doesn’t heal perfectly and there can still be a little opening or flap of skin where pus can collect. Without a full exam under anesthesia, he said, it would be impossible to tell what’s going on. But he didn’t seem alarmed, and for whatever reason, his guess was good enough for me. (Not-so-fun fact: After that appointment, I walked across the street to Peet’s Coffee, sat down to do a little work, and had my laptop stolen right out from underneath my fingertips. Crazy stuff. Important: If this ever happens to you, do NOT chase the thief like I did. I got lucky and didn’t get hurt; tragically, some others have not been as fortunate.)

Anyway, I did ask my SF surgeon to recommend a surgeon in Ohio — which he did, a very well known one at the Cleveland Clinic. After a few more months of procrastination, I gave his office a call in March of this year and got on the calendar. Then COVID hit, patients with non-life-threatening ailments were supposed to wait it out, and I had another foot-dragging excuse.

Finally, at the end of July, I got my butt up to Cleveland to see my new surgeon. He’s great. I explained my whole weird story. First thing he had me do? Go get a colonoscopy. If you’re keeping score at home, that’s a whopping 20 months from the first time I had a butt problem to my first colonoscopy. I have to assume that my 40-mm cancerous polyp took a heck of a lot longer than that to form.

So there you have it; that’s the story. It took longer to tell than I planned, so I’ll save the rest of my thoughts for a future post. More to come.

What This Is

This afternoon I found myself at a hospital in Cleveland, getting a CT scan, and it occurred to me that I wanted to write about this experience. I don’t love writing about myself, so with a few exceptions (like this post about anxiety), I don’t really do it.

So why now? Because I’m in some uncharted waters, waters I didn’t need to end up in, and I hope that sharing my story will either (1) help at least one person avoid facing a situation like this (generate awareness) or (2) resonate with some folks who’ve had similar experiences but never been able to candidly share the gory emotional details (build community).

Last week, I had a colonoscopy, and they removed a 40 mm polyp from my rectum (though it wasn’t explained to me at the time, I did enough research on my own afterward to learn that that’s pretty big). A few days later, I got the call I was dreading, that the polyp was confirmed to be cancerous. In a future post I’ll explain (1) why I had the colonoscopy last week, (2) when I should have had the colonoscopy, and (3) my intense emotional struggle trying to reconcile those two. (The title of this blog should be a clue where I’m heading with that.)

The purpose of today’s scan (results to come tomorrow) was to determine whether the cancer has spread beyond my rectum and colon into my liver, lungs, etc. I decided to write my first post tonight partly because I needed a distraction from the waiting and wondering, and partly because I want to transparently share the anxiety I’m feeling tonight, when the range of possible outcomes is as large as it can be. If I’m going to do this, to put myself out there in this way, I want to authentically capture the entire journey, in hopes that at least a few readers will get more out of it that way than if I were to write the whole thing looking backwards.

On the one hand, there’s a chance the cancer is widespread and I’ve got an even tougher battle ahead than I thought. On the other hand, maybe the cancer was totally confined to the polyp and I’ll be back to work next week. Maybe they’ll have to cut out just a bit more; maybe my entire colon.

I have a wife whose amazingness defies description, a beautiful daughter who is pure joy, wonderful parents and family, incredible friends, and health insurance. I have a lot of gratitude and I hate losing at anything. Whatever my personal outcome — whether my battle ends next week or takes many years — I want to use this website to help people. Here goes.