A Bag’s Life

Tomorrow marks two weeks since my surgery, with the second of those spent at home, continuing to recover while also adjusting to what is in many ways a very different life for our family. We still haven’t received the final pathology, so we’re not sure what, if any, additional treatment lies ahead. My post-op follow-up appointment in Cleveland is Tuesday 10/6, but we’re hoping it won’t take that long to find out.

A lot of people have asked what it’s been like living with my new ileostomy bag, and I never feel like I have a good answer. Probably because the answer is complicated. On the one hand, I’m trying to stay deeply focused on gratitude: The bag is only temporary, a blessing many people in my shoes don’t have, and no matter how you cut it, it’s basically saving my life.

Does the day-to-day suck a little bit? Yeah, absolutely — but like most people, I’d imagine, I’m willing to endure just about anything for 3-6 months if it saves my life. Oh, and there’s another, subtler silver lining: The pandemic, for all its horror, has made it such that I’m able to avoid many of the potentially awkward social-situation challenges (the office, large gatherings, public places, etc.) that would normally accompany such a significant lifestyle adjustment. I’m sure I’ll have my share of embarrassing bag moments in the months ahead, but the opportunities for disaster are certainly more limited.

Still, as much as I try to keep my mind focused on all the positives — and they really are overwhelming positives — I’m not always successful. Great insurance, a rockstar surgeon and care team, financial stability, an amazing superhuman wife I don’t deserve, a beautiful daughter who’s growing up daily before our eyes, a dad who drove 15 hours from Minnesota to pick me up from the hospital, an employer that has gone miles above and beyond in taking care of our family during this time — the list of blessings is never-ending. Even so, I’ll admit I still struggle a lot with feeling sorry for myself. Usually the pangs come when I’m emptying or changing my bag, or while I’m inching my way down the block for a struggle-ridden 15-minute walk, or in the middle of the night when my crampy belly and I are laying awake because in 34 years I never learned how to sleep on my back.

But my real battle against self-pity actually has far less to do with the bag itself; it’s driven, somewhat unexpectedly, by the inconvenience of being unable to lift anything heavier than 10 pounds. I never realized how much of taking care of Addie, who will turn two in a few weeks and is closing in on 35 pounds, is dependent on picking her up and setting her down. And thus, despite my steadily increasing energy levels and appetite to help, I’m virtually incapable of watching her without assistance, only increasing the already enormous burden my surgery and recovery have placed on Alexis. Not to mention that I’m sure Addie is wondering why (vague explanations of my tummy and butt ouchies notwithstanding) a big part of our physical connection is suddenly gone. We’re having beautiful fall weather here in Columbus, and all I want to do is run around the park with her and toss her in the air to make her laugh hysterically. 

I wish I could simply report, “body healing; mind strong.” But while that wouldn’t be completely untruthful, it’s certainly not the whole story. I don’t like admitting to mental and emotional struggle, but I’m committed to keeping this account of my experience brutally honest. If there’s anything someone might take away from this part of my story, I’d hope it’s that sometimes you can know the way you want to think, the way you should think, but you can’t quite get your mind there all the time — and that’s fine. I’m learning to be fine with it, learning to go easier on myself when I’m having a rough patch.

Like I said earlier, my prevailing thoughts right now are around gratitude, perspective, and happiness. This won’t be the fall season our family envisioned, but it can still be a really great one. And because of my incredible good fortune and amazing doctors and nurses, it will pave the way for countless even happier seasons to come.

And hey — at least I’m having a better fall than the Vikings.

Home Sweet Home

Today I came home from the hospital, and what a week it was. The surgery last Monday was successful and went as planned, and we’re expecting the pathology results (which will finally determine my cancer’s stage, and what additional treatment I have) within the next week. I’m the proud owner of a very cool, very long scar down the middle of my belly and a stoma-plus-ileostomy-bag setup just to the right of that.

Full disclosure: The recovery was really tough — the hardest thing I’ve ever gone through, in fact.

It went something like this:

  • Monday 9/14 (day of surgery) — Initially it took a few hours post-op to get my pain under control, so while I don’t remember much about this stretch, I do recall moaning and groaning and cursing a lot. Once we got the meds squared away, though, the rest of the day wasn’t too bad. The novelty of everything sort of keeps you riding high for a bit.
  • Tuesday 9/15 — First day of clear liquids and soft diet. Had some juice and a few bites of mashed potatoes, etc. Still felt mostly fine. Learned how to operate my bag.
  • Wednesday 9/16 — Still on soft diet, but progressed to slightly larger quantities. In the afternoon, though, The Attack of the Nausea. This was like nothing I have ever experienced. I was also off the heavy meds at this point, so the pain and nausea started to blur together and become indistinguishable. Eventually it turned into violent vomiting, which, with a fresh 10-inch incision in your lower abdomen, is something like what I have to imagine getting stabbed feels like. They took an X-ray just to make sure nothing had ruptured, and saw some large gas bubbles. My choices were (1) tough it out, until the gas worked its way out, or (2) expedite things with a tube inserted into my stomach through my nose (the much dreaded “nose tube” as it’s often called). If you choose (1), they give you a day or so, and then move you to the nose tube anyway if you don’t improve — some interesting risk-reward analysis there. I chose (1). Needless to say, they also moved my diet back to “no food or drink.” (Apparently, this sort of severe nausea is a common setback for this surgery. Sometimes, when they’ve been cut apart and reconnected, the bowels take awhile to wake back up, and so the initial food and drink ramp-up period can make them quite angry.)
  • Thursday 9/17 — The agony continued, but the vomiting finally stopped. I should note: I was very lucky to be in the care of some absolutely incredible superhero nurses. My gratitude to them is hard to articulate. Carlton, Chrissy, Katarina — from the bottom of my heart, thank you.
  • Friday 9/18 — I started to turn a corner on the nausea. They allowed me to have sips of Gatorade, which made an enormous difference.
  • Saturday 9/19 — I ventured back into soft foods, but this time much more cautiously; just a few bites at each meal.
  • Sunday 9/20 — Still on the soft diet, I had three somewhat normal (but still small) meals and got the go-ahead to head home Monday (today).

So that’s what I’ve been up to! I’m really excited to be home. I missed Alexis and Addie terribly, though we caught a huge break on Saturday when my floor lifted its visitor ban and Alexis was able to make the drive up for a few hours, which was an emotional lift I can’t even describe. I’ve said this before, but she is the true hero of this ordeal, of our family, and of basically the world. Also, my dad is in town from Minnesota to help out, and it’s wonderful to see him.

Ultimately I don’t think I was mentally prepared for this week. I like to think I have a lot of inner strength, but I’ve never considered myself (nor, I think, would most people consider me) a very “tough” guy in most traditional senses of the word. I’m a well documented crier, for example, and just put me near a snake or spider for more convincing proof.

This week, though, I had to dig deep in a new way, fight through some legit tears, and find some mental reserves I didn’t know I had — so while I certainly would have preferred a smooth, linear, up-and-to-the-right recovery, I’m grateful to have uncovered those parts of myself. I have no doubt I will draw on them again in life. And some good news: I’m told the reversal surgery in three months is a much quicker recovery.

How to Fix Your Plumbing

I have to admit — until recently, I didn’t totally understand the mechanics of the surgery I’m having on Monday. (In case you’re wondering, the technical name: “low anterior resection, colorectal/anal anastomosis, loop ileostomy.” I just copied that off a sheet I got today.) Now that it’s been explained to me in more detail, I think I mostly do. The plumbing analogy might seem rough, but it’s helpful, so I’ll try to share it in a way that’s as close as possible to medically and anatomically accurate based on my limited understanding. I’m sure doctors and people who’ve actually had this surgery will cringe a bit at my attempt, but here goes.

The rectum is the last 6-8 inches of the colon (large intestine). Like much of the rest of the digestive tract, it approximates a pipe. In my case, part of that pipe has a tumor in it — so that part needs to be removed. Once it’s removed, there will be a gap in the pipe, so the two ends remaining on either side of that gap will need to be soldered together.

When you solder two ends of pipe together, however, you can’t immediately send high-pressure water rushing through the pipe; the new connection needs time to set. (This might be where the analogy, or at least my version of it, breaks down. Consult a plumber or surgeon, or better yet, both.) In the case of the human rectum, that healing usually takes 2-3 months.

So how do you give the newly reconnected rectum a few months to rest? (In other words, how does one not poop for a few months?) You have to divert stool somewhere else. That’s where the bag comes in. I’m actually going to have an ileostomy bag, not a colostomy bag as I incorrectly thought when I wrote my last post. “Ileostomy” means they’re pulling the ileum, which is part of the small intestine, through the abdomen so that stool can exit the body (and enter the bag) there. Since the colon comes after the small intestine in the digestive tract, that means the stool will skip the colon altogether. Because one of the colon’s jobs is to absorb liquid from the stool, the waste that collects in an ileostomy bag is more liquid in consistency than that of a colostomy bag. That last part might have been info that some of you could have done without, I suppose. 

Anyway, in a few months, once my rectum has healed, the small intestine will get pulled back inside my body; everything will get reconnected into one continuous, complete digestive tract; and I will once again have end-to-end plumbing. Because the rectum’s primary job is to hold stool until it’s time to use the bathroom, having less of a rectum might mean I have to go more frequently or urgently, or have trouble holding it in. It sounds like the degree to which patients regain “normal” bowel function varies, but most everyone does experience at least some changes in that department post-reconnection. Which makes sense, since these aren’t minor procedures. (I mentioned infertility risk in my last post as well — we went ahead and banked some sperm just to be safe. Ah, the many surprising places I never thought this adventure would lead us.)

My main question is, though, who first thought of trying this? I’m really glad they did.

We got up to Cleveland last night, and today I had a bunch of prep appointments (including getting the stoma placement drawn on my stomach in sharpie — Addie thinks it’s a cool tattoo). My arrival time on Monday is 5:45 a.m., and then I have 5-7 days in the hospital after surgery. The long-retired athlete in me has been trying to get jacked up as though Monday is a big championship game, but a wise friend shared what I now think is a much better perspective: “The scary parts are over; now all you have to do is show up and take a nap.”

Go for Liftoff

At long last, a plan: I’m scheduled for surgery on 9/14 (a week from tomorrow) with Dr. Dietz at UH in Cleveland, with some prep appointments the morning of Friday the 11th. We’re heading up next Thursday and planning to stay a week. After he cuts out as much of the rectum as necessary to be confident the cancer is gone, I’ll have a colostomy bag for about three months, then a procedure to reconnect things, with the idea being that I’ll resume or approach normal bowel function at that point. The chemo plan will be determined post-surgery, once they’re certain how many layers of healthy tissue the tumor penetrated.

We never got a complete second opinion from OSU. They weren’t able to read my final MRI because of interference from some metallic clips put in during my colonoscopy to mark the location of biopsies. So while OSU was helpful in presenting their view of my options in light of the information they had, they wanted to wait another 3-4 weeks for the clips to fall out naturally before conducting a pelvic MRI of their own. Needless to say, I would have gone crazy sitting around another month doing nothing about my cancer.

It would’ve been nice to have a second hospital say, “Yeah, we agree with what UH is doing,” but we ultimately didn’t need that. We’ve been very impressed by UH and Dr. Dietz, a leader in rectal cancer surgery, and we feel really good about putting things in their hands. We gathered as much info as we could from multiple good sources, so despite making our share of rookie mistakes, I wouldn’t change how we approached the process in general.

I will admit, though, that our frustration peaked last week when we had two hospitals looking at the exact same MRI, with one confidently basing a recommendation off of it and the other claiming it was worthless imaging. I totally get that hospitals like to do their own scans, which can create some weird dynamics when files are shared, but such a large discrepancy was hard to grasp. But, UH did the scan (with a radiologist in the room, actually) and felt comfortable with the results despite the clip artifacts. I guess I don’t blame OSU for having reservations about drawing conclusions from imperfect data that they themselves didn’t collect — plus, they didn’t have the benefit of having performed a full exam under anesthesia. Still, weird.

Mostly, though, I’m relieved. Relieved to have a sense of the road ahead, and relieved to be crossing the threshold from diagnosis to treatment. It’s been a lot of very long days and weeks waiting to hear how we’re going to attack this thing. Am I nervous for surgery? Yeah, absolutely. I’m nervous for life with a bag, I’m nervous about whether it really will be temporary, and I’m nervous about chemo. I’m nervous about issues with fertility (we’d love for Addie to have a sister) and sexual function in general.

And as the proud owner of an anxious, overthinking mind, I’m also nervous about a bunch of totally irrational stuff like waking up mid-surgery to see an alien bursting from my guts and attacking all the doctors. Ok, I just added the alien part now — which means it’s time to put down the pen and get some sleep.

To Keep My Ass, or Not to Keep My Ass

Today we met with a colorectal surgeon at OSU. I love my surgeon up in Cleveland, and he’s one of the top rectal cancer surgeons in the country, so I’m planning to have the surgery with him — but we figured a second opinion can’t hurt as we continue our information-gathering tour. I’m already in the OSU system after having my colonoscopy there, so they keep offering us these appointments and we see no reason not to take them.

It was interesting how this OSU surgeon outlined my options. While it wasn’t necessarily new information, it was presented in a way that got me thinking. He started by explaining how the safest route is to remove the entire rectum, anus, part of the colon, and surrounding lymph nodes. Take the whole damn thing right out. Lowest possible chance of the cancer recurring and thus, statistically the longest life expectancy. The downside, of course, is that I’d have a permanent colostomy bag. Not great, and a big lifestyle change; but lots of people have them and still lead active, happy lives. (Brenda Elsagher’s books have been huge for me here.)

The other option is to attempt to cut out the tumor, but in such a way that I either (1) don’t need a colostomy bag at all or (2) need only a temporary colostomy bag so that things can heal before being reconnected. He mentioned that while option (2) sounds straightforward and maybe like a best-of-both-worlds situation, about half the time the patient struggles to regain normal bowel function and requires additional surgery. The problem with option (1), as I understood it, is that it generally requires more chemo and radiation to accompany it. Plus, most importantly, the risk of recurrence is highest, maybe on the order of 20% within five years.

Disclaimer: I’ve tried to take good notes throughout this process, but it’s very possible — likely, even — that I’m relaying some of this incorrectly from a medical or oncological perspective. Please don’t consider any of this fact; only my understanding of what’s been explained to me. Makes you wonder how much doctor-to-patient communication is really retained accurately.

On the drive home, all this information led my mathematical brain to the question: Why wouldn’t I choose the option where I’m most likely to live the longest?

Backing up a bit, here’s a good example of how the brain can be irrational under duress: When I first found out I had cancer, the thought that terrified me most wasn’t dying; it was the possibility of living the rest of my life with a colostomy bag. The mind assigns strange weights to unknowns, doesn’t it? In the weeks since then, I’ve come to my senses and realized that not dying is most definitely the priority — and if a colostomy bag makes that possible, then so be it.

In fact, last week I told my wife that my top priority right now is making sure I can dance with Addie at her wedding. And that’s really what got me thinking, Why not just cut the whole damn thing out? There’s nothing more important to me than being as sure as possible of being around for my family for as long as I can.

My tumor board meeting at University Hospitals in Cleveland was today, so tomorrow I’ll get their recommendation. My surgeon there has already told me he’ll do whatever he can to make sure I don’t need a permanent bag, and of course I trust him to accomplish that in a way that effectively mitigates the risks of recurrence. If anyone on earth can do it, it’s him. But there’s no doubt that compared to whatever he’s able to pull off in the way of safely saving my ass, taking the whole thing out would ultimately be safer statistically. I’ve always known that, but it hit me in a different way today.

Good news is, I don’t have to decide tonight, and tomorrow I’ll have much more information to consider. I guess what was strange about today was that I hadn’t really been thinking about this as a risk-reward decision that I got to make. Seems obvious in retrospect. But I suppose I was just looking for a doctor to tell me what to do — or even with multiple opinions, I was expecting each doctor to tell me what to do, and then I’d decide which doctor to listen to. I wasn’t really expecting any doctor to offer me a choice. Hey there, friend — you the gambling type?

Am I qualified to decide something like this? I have a tough time choosing pizza toppings.

More Good News

Today I got the long-awaited results of the lymph node MRI: all looks good — what an incredible relief. After the tumor board meets on Wednesday, I’ll get my treatment plan on Thursday. When I spoke to my surgeon about the MRI results, he said he thinks it’s unlikely that chemo will come before the surgery, though that’s still a possibility.

I’m also continuing my parallel process at OSU this week, with a full slate of appointments Wednesday through Friday. I’m hoping that the two hospitals agree and recommend the same treatment plan — that would make it easy!

I think that’s all for tonight. Very grateful for the good news and ready to quiet my mind a bit. And eat a few cookies. (I had a very healthy meat-free dinner.)

On Thinking, and Chadwick

First, something lighthearted.

Yesterday I had a pelvic MRI focused on my tumor and specifically the surrounding lymph nodes. This MRI was much different from the last one, which focused on my chest and abdomen and went much like I was expecting based on what I’d heard from the many folks in my life who have had MRIs: pleasant music in your headphones; nice robot lady telling you to breathe in, breathe out, and hold your breath; contrast in your IV; generally loud, but nothing terrible. You just lie there.

Turns out that for the type of MRI I had yesterday, they have to fill your rectum and part of your colon with gel beforehand, using a tube-and-syringe contraption. Then, in order to prevent the gel from leaking out, you have to basically clench your butt shut the entire 40 minutes. But apparently the gel makes the pictures much clearer, so I’m all for it! Too much detail? Probably, but this is a butt blog, after all, and now you’ll be prepared in the unlikely event you ever have to have a similar scan.

On a more serious note, I thought I’d share some of my recent mental struggles. I’ve battled anxiety my whole life, though in the last few years I’ve made a ton of progress. Basically, my mind perpetually imagines bad outcomes, even (and sometimes especially) unlikely ones. For years I’d get really mad at myself: You know that negative thoughts are bad, so just stop thinking them! Think positive thoughts instead, you dummy! Or, even worse: If you keep thinking negative thoughts, they’ll all come true!

The breakthrough was understanding that negative thoughts are normal, and fine, and powerless. I stopped getting mad at myself for thinking them, and more importantly, I stopped trying so damn hard to stop thinking them. I started viewing them as meaningless (and thus, powerless) little abstract things that just flit in and out of my brain. I learned to observe and dismiss them. A friend sent me this quote today, and I think it summarizes this idea well:

When we resist a thought, an emotion, or a circumstance, we reject life as it is. This creates further tension and suffering in the mind.

While that strategy sounds good, I’ve been far from perfect in sticking to it. And now I’ll admit that the negative thoughts are out of control. After I got my liver and lungs cleared, my anxiety temporarily got a lot better. But then, gradually, this began to creep in: Even if they cut out all the cancer they can see, it can still come back anywhere, anytime. If I’m lucky enough to live another five decades, will I spend every day of those years wondering if that’s the day the cancer comes back? What if I think I’m cured and then it decides to show up in my lungs before my daughter even starts kindergarten? I know that’s probably rough to read — I’m sure you’re thinking, Dude, you can’t think that way! — but hey, I’m committed to transparency here.

My guess is that pretty much everyone who gets diagnosed with cancer — or really anything life-altering — struggles with similar thoughts at one point or another during their battle. Ultimately, I know I’m well equipped to handle these thoughts, especially if I focus on mindfulness and staying present. After all: Before cancer, any day could have been the day I woke up with cancer — and I managed to live just fine with that reality. The future was wildly uncertain then, just as it is now. So while a lot has changed, in many ways not much has changed.

All that said, I was deeply saddened to learn of Chadwick Boseman’s passing yesterday at age 43 after a heroic and inspiring battle with colon cancer. Despite my best efforts to not make it about me and project his outcome onto my own situation, I’d be lying if I said it didn’t freak me out, since one has to assume he had all possible resources available to him. Colorectal cancer is just nasty stuff. If there’s the smallest of positives to find, maybe it’s that many reports of his death are also highlighting that we’re seeing so much more of this cancer in younger people — so we can hope many lives will be saved by that awareness. Certainly doesn’t make it any less tragic to lose such a bright young star, though.

Man, what a terrible loss for the world. Everything he did was incredible, but as a baseball person, I’ll definitely remember him as Jackie Robinson in “42,” a performance best described last night by Major League Baseball as “transcendent.”

I think this sums it up best:

So, What’s the Deal With Colonoscopies?

Today we met with an oncologist at OSU. One of the things I’m trying to navigate is having two different healthcare systems involved in my care. I really like my surgeon up in Cleveland, the one I was originally referred to by my surgeon in San Francisco. But OSU is 10 minutes from home, so I’ve been trying to go there for things that don’t require his direct input or oversight, like the colonoscopy. I still don’t know in what order I’ll have surgery, chemo, and radiation (getting that plan next week) but I’ve been hoping the latter two can be done down here in Columbus. Cleveland is a lovely town, but there are no frequent-traveler miles awarded on I-71.

Either way, today was really helpful. I learned a lot about the variables that go into deciding on a treatment plan, and the oncologist we met with actually happens to be researching the troubling increase in colorectal cancer rates among younger people. She mentioned some interesting theories around diet, the increase in C-section births, and other factors.

One thing we didn’t really get into is why we don’t recommend colonoscopies at a younger age, especially for people with colon cancer in their family. I’ve ranted about this to enough friends and family that I’m sure it’s like, Oh boy, here goes Crazy Rectal Cancer Guy again, thinking his freak statistical event makes him qualified to critique the entire healthcare industry. I’ll be the first to admit, I’ve been a little emotional about this, acting like I’m the first person to ever believe they’ve uncovered some great flaw in the system. To all said rant recipients: I promise it’s only because I care about you.

My rants have generally just consisted of the argument that even if increased screening saves only a handful of people in their twenties, thirties, or forties, surely it must be worth it. Not from a cost perspective — a colonoscopy isn’t cheap — but just ethically. If rates are going down among older people, with increased screening often getting the credit for that trend, doesn’t that make the solution pretty painfully obvious?

Well, the last thing I want this blog to be is misleading or alarmist (or anything approaching medical advice), so I want to make sure to present both sides of the issue. As it has been explained to me by some very smart people in medicine, I’ve been overlooking to some extent the fact that performing a colonoscopy isn’t without some risk. It’s a very small risk, but a risk nonetheless, that, for example, a patient could react negatively to the sedative used during the exam, have excessive bleeding where a tissue sample is taken or where a polyp is removed, or suffer a perforation in the wall of the colon or rectum.

Should you be worried about these possibilities next time you get a colonoscopy? Definitely not. But if the world suddenly decides to start performing colonoscopies on millions and millions of 30-year-olds, it’s a statistical certainty that at least one of them, somewhere, is going to have something bad happen, and maybe even die from it. Now, is that risk worth it, when that person could have been perfectly healthy, with no symptoms and no family history of early-onset cancer? We’re getting into some tough philosophical questions there. Even if you try to argue, as I have, that every young person with hemorrhoids or an anal fistula should get a colonoscopy, you’re still in some dubious statistical territory.

My intent in writing about this stuff was never to send every healthy young person running to their doctor begging for a colonoscopy. Everyone’s situation is unique, and yes, it’s important to understand that while incredibly routine, it’s not a risk-free procedure. But it sure doesn’t hurt to ask your doctor, next time you’re there, if it might make sense for you, especially if you’ve had any of the common symptoms of colon cancer. It doesn’t hurt to make sure you understand your family history. And most importantly, it doesn’t hurt to ask questions or get a symptom checked out if there’s a nagging voice telling you to.

(It also doesn’t hurt to eat more vegetables. Lots to report about my new diet in a future post.)

The Perfect Do-Over

A few weeks back, Addie (almost two years old) and I took a little daddy-daughter trip from our home in Columbus down to Dayton. My wife Alexis is a cookbook editor and author extraordinaire with an important deadline looming, so we decided to get out of the house and give her a solid stretch of a few days alone to crank out some work. Plus, I wanted to see how Addie and I would survive on our own, and whether we’d reached the point of bonding a bit over a shared adventure.

Why Dayton? No good reason. We had already taken family road trips to Pittsburgh and Cincinnati, and I’ve had plenty of quality time in Cleveland. Dayton is just over an hour away, and I decided to err on the side of a shorter drive for my first excursion solo-parenting a toddler.

Our plan for the trip was to drive down on Wednesday morning, spend three nights, and drive home Saturday morning. My colonoscopy was the Monday before we left, and when we hit the road Wednesday, I still didn’t have the pathology results. I knew I’d had a massive polyp removed, but I didn’t yet have confirmation it was cancerous — though deep down, I probably knew it would have been something of a miracle for a growth that large and ugly to be benign.

Addie and I had a blast together and made memories I will cherish. We found lots of parks, ate some fantastic local BBQ (check out the Texas Beef and Cattle Company), and spent multiple afternoons exploring the very cool Carillon Historical Park (there was LOTS I didn’t know about Dayton).

The problem was this: Try as I might to clear my head of the unknown, stop checking my phone every two seconds for a call from the doctor, and focus on capturing memories of a precious, fleeting moment with my daughter, I never fully could. I was perpetually distracted, never really present. Then, during Addie’s nap Friday afternoon, I got The Call. When she woke up, we packed our things, cut the trip short a day, and got back home to Mama as fast as we could.

Fast-forward a few weeks: Assuming this would be my last free weekend for awhile (at least “free” in the sense that I’d be up for travel), I decided that Addie and I needed a do-over. (Plus, Alexis’s deadline still looms.) Sure, I’m now living with the known reality of cancer, but (knock on wood) there don’t seem to be many unknowns remaining — so while I’m nervous for the road ahead, I’m in a far better state of mind to fully immerse myself in daddy-daughter time.

So, on Friday I picked Addie up early from daycare and we drove an hour and 40 minutes down past Cincinnati to Covington, KY. We explored all day yesterday (I recommend Devou Park), ate a delicious outdoor dinner at Frida (try the brussels sprout tacos) and came home this morning.

Chicken fingers and fries are still allowed for Addie. I went with the grilled chicken sandwich and tried to ignore the chips. Rome wasn’t built in a day.

A long way to drive for a short trip? Definitely. But so, so worth it. I soaked up every minute of our do-over trip, including the 30-odd minutes of the drive down spent listening to “We’re Going to Kentucky” on repeat.

We’ll give you Dayton, cancer — but Kentucky is ours.

The Power of Humor

This week a friend sent me Brenda Elsagher’s book Your Glasses Are on Top of Your Head, a perfectly timed gift. If you haven’t heard of Brenda (I actually hadn’t), she’s a triple-threat author, speaker, and comedian; and also a colon cancer survivor. Like me, she is a Minnesotan who developed a tumor in her rectum in her thirties. She has this great website, and here is a good article that sums up her journey pretty well. If you’re more of a video person, check this one out. She’s a really remarkable person doing some really inspiring work, bringing joy and laughter to darkness and, of course, stressing the importance of getting a colonoscopy.

Anyway, I’ve really been enjoying the book, so much so that I took a little break from devouring Michael Jordan: The Life, which my wife got me as a brilliant gift in light of my obsession with The Last Dance.

This excerpt from the book’s introduction was so touching and so powerful that I wanted to share it here (I know, I know; I said in my last post I was trying for the moment not to read things like this). It’s long — I think you need the whole excerpt to have the proper context — but it’s worth it.

Brenda writes:

One day a women called and told me she had just read my first book, If the Battle Is Over, Why Am I Still in Uniform? She said she could relate a lot to what I went through as a colon cancer survivor, except with one difference: her diagnosis was terminal. She was a couple years younger than me, and our kids were similar in age. When she asked me to speak at her support group close to my home, I didn’t hesitate.

The first person I met in the group said, “I don’t know how I can possibly laugh at anything about colon cancer. I lost my beautiful daughter to it last year.”

I knew this might be difficult, but I did the best I could, and he thanked me afterward for helping him see he could laugh at awful things, and that cancer wouldn’t have so much power over him anymore. He said he wished his wife had come with him.

Teresa, the woman who had asked me to speak, wanted to keep in touch, and so we made plans for lunch at her favorite Mexican restaurant nearby. A couple months went by; she invited me to visit and showed me her scrapbooking room, and I learned how dedicated she was to this hobby. She had been making huge scrapbooks for everyone in her family, and they were beautiful. I learned she had several trips planned for each of her children. She allowed them to take one day off a month from school to hang out with her and was doing a lot of fun things, creating happy memories while she still felt good, hoping beyond statistics that she would survive. She lived with purpose, also took trips with friends and sisters, living life with gusto and making more memory books from those trips.

When I ran into her at a craft boutique, we both celebrated that she was still alive. We set time for some margaritas, and again I enjoyed her company very much. I would call and tease her when she answered the phone, saying something charming like, “Well, you are still alive!” It sounds crass in writing, but it was the weird right thing for me to say, and for us to laugh about because it was her ultimate worry. It was a couple more months before I heard from her again.

“Brenda, I’ve got something to tell you, and then a favor to ask of you.”

“Okay friend, what is it?”

“We just got back from the doctors, and the cancer is now in my brain. I won’t have much time left, months only, and there’s something I want to discuss. I want you to give the eulogy at my funeral.”

“Wow, Teresa, I know the cancer must have really gone to your brain. You want someone from your family who’s known you for a long time to do this at your funeral, not a friend you barely know. We’ve only seen each other a few times and there’s a lot I don’t know about you. I’m honored, but I don’t think I am the right person.”

“Brenda, I’ve been thinking about this a long time. I knew this time was coming. This is why I know this is a big favor. You will have to spend some time with my family and me, getting to know me. I want people to laugh at my funeral, so I want you to do this because you are funny, and I know you’ll send them away with a special gift.”

“What’s that, Teresa?”

“I want you to tell them how important it is for them to get their colonoscopies. You and I were unusual because we were diagnosed so young. As you said in your talk at the support group, it is your mission to educate people on this. You’ve got to urge them to follow through as a last word from me. Can you do this? Will you do this for me?”

“How can I refuse? Are you sure?”

“You will give the perfect eulogy, I know it.”

“Okay, when shall I come over?”

Brenda Elsagher, Your Glasses Are on Top of Your Head
Not pictured: The Power Broker, my year-long slog (admittedly, a fascinating slog)