Cancer Just Is Pre-Orders!

I am pleased to announce that Cancer Just Is has been made available for pre-order through my publisher’s website! Just click here to check it out and order your copy today! Pre-orders will ship by mid-December, which works perfectly for those wishing to give it as a gift. This is a very exciting time for me, and I am beyond grateful to my publisher for working to have Cancer Just Is available on such a short timeline.

October 19th, 2018

Well, it’s been a month already since we got “the scans.” In that time I haven’t felt I’ve gone downhill at all, but who knows if that’s reflective of what’s going on inside me. Something I learned early on in my time having cancer is that how you look doesn’t necessarily have any bearing on how you feel, and how you look and feel doesn’t necessarily relate to your actual state of health. So I’ll refrain from making any assumptions. It'd be nice if the Votrient was keeping things in check, but that's unlikely.

Since we got the news that my cancer started to grow exponentially and had spread more than ever before, we’ve enjoyed a wonderful cruise along the Rhine and a lovely week in Orlando with both our immediate families. We don’t really have much planned from here on out, but we’ll be visiting with friends and extended family as much as we can and see what other ways we can make the most of our remaining time together. I have a couple writing projects I’m looking at wrapping up and another publishing prospect in the works, which I’ll announce more about when I can. For now, we’ll keep doing the one thing we can: enjoying each moment for what it’s worth, in whatever ways we can.

October 12th, 2018

I’m getting published!

I am beyond thrilled to announce that my book ‘Cancer Just Is’ has found a publishing home with Smyth and Helwys, an independent Christian publisher based in Georgia. I don’t have a release date and it isn’t available for pre-order yet, but I will update here as soon as we figure out those details. Right now it’s in the copy-editing and cover design phase of things. I’m so grateful that this book will be published and that my ideas about cancer and God have a chance to reach a broader audience now.

October 10th, 2018

This is long overdue and I apologize for the silence here. I don’t really have an explanation other than I wasn’t sure what to do with this blog, given the change in my circumstances that’s happened recently.

As you may have heard elsewhere, like Twitter or Facebook, I received the dreaded scan results I’ve always sort of known would one day come but kept on hoping wouldn’t until tomorrow or the day after. My cancer has begun to grow exponentially and has spread throughout my abdomen and chest, from my pelvis into my neck. It has also worked its way into my liver, which had always been free of disease before. Cancer does that sometimes. Mine has been very slow-growing until now. What had been a fairly well-managed, chronic condition is now a definitively terminal one, and I’m looking at weeks to months. With that news fresh in my mind I wasn’t sure what I wanted to do with this space, hence the break in posts.

Christina and I decided to go on a bucket-list type trip to Europe, a continent neither of us had visited previously. Our trip last week was a wonderful and much-needed escape, and I cannot thank everyone who helped to fund our travels enough.

I also have some exciting developments happening in the book-publishing department, which I will share more about when I am able. Stay tuned!

As for cancer treatment, there’s really nothing left to try. We were never realistically looking at curative treatments anyways, but now it’s really down to hopefully slowing growth enough to buy a little more time than I’d otherwise get. I’m on Votrient again, which will turn my hair white but not much else by way of side-effects. For now I feel fairly well, so long as I have my digestive enzyme supplements with every meal.

I think that’s about all the news since my last post. I’ll post here some as I have reflections to share. I’ve got a couple half-finished drafts waiting for a little more time and attention before I share them here. That’s all I have to say!

September 5th, 2018

                This most recent cycle of the immunotherapy clinical trial went a lot easier than the first two! I didn’t have a fever at all, and while my body temperature definitely elevated a little, it was only for an evening. All of the side-effects were greatly diminished, both in severity and duration, and a couple never materialized at all. I kept waiting for the figurative other shoe to drop but it never did. I’ll take it.

                We’re back home now and plan to be until the 19^th, when I have my next set of scans. We’re hoping to ride some roller coasters and do a little camping and celebrate our birthday in the meantime. I’m also trying to exercise and stretch and whatever else I can do to recover some strength and hopefully not lose weight or maybe even gain a little.

August 28th, 2018

No treatment today. Several levels of things like bilirubin and some enzymes and I’m not sure what all were high today, some extremely so. As such I have a hydration backpack overnight and we’ll try again in the morning. Hopefully I can get the next cycle of treatment soon!

August 27th, 2018

We’re heading back into New York City tomorrow for round three of this clinical trial. Cycle two was far easier than the first go around, and I’m hoping that trend continues. We’re planning to stay in NYC about eight days or so, which will let me receive IV hydration as long as I need it. Hopefully that helps mitigate side-effects as well, which previously have included cold symptoms such as aches, a stuffy nose, and fever, along with a handful of other weird things like itching deep within my surgical scars. There’s a theory though that immunotherapy should include a lot of side-effects, because that means your immune system is doing something. We’ll find out in a few more weeks when I have my next scans if what it’s doing includes fighting cancer or just being annoying.

The last week or so at home has been a nice break from all the time we’ve been stuck in NYC lately. Last week my dad and I went to Canada’s Wonderland theme park near Toronto. It’s owned by the same parent company as Cedar Point and, as such, is included in my season pass. I didn’t feel as well as I was hoping but it was still a fun day and I got to ride Behemoth and Leviathan, a pair of roller coasters I’ve wanted to ride for a while. Then over the weekend Christina and I led our Youth Group’s end of summer overnight event, which included games, pizza, ice cream, a movie, and surprisingly exhausting laser tag—I’m still a bit sore from all the running. It’s been nice to have some normal life in between all the treatments, but I am glad to get back into New York City too. It’s like a second home, and I enjoy being there when I’m not stuck in the inpatient floor.

August 14th, 2018

       With all my blood counts looking good this morning and me starting to feel better, we packed up and checked out of the Ronald McDonald house. This afternoon we took the usual shuttle bus to the airport in New Jersey, typically about a one-and-a-half hour ride. From there it's just a half hour fight (thanks Corporate Angel flight program!) back to Corning, NY, where we haven't been for over a week now--already a departure from our planned 4 nights in NYC.

       About 20 minutes from the airport we got a call from the hospital. One of my blood cultures came back positive for an infection. Since I have no symptoms we kind of assume it's just a contaminated culture but we have to play it safe so we're heading back to NYC right now. I'll be admitted at least for the night, and since I believe it takes 48 hours to fully grow everything from blood cultures I'm going to guess I'll be in the hospital that long as a minimum. We're pretty good by now at being flexible with our plans, but this was a little last-minute even for us.

       Something to pray for if that's your thing would be that it isn't actually an infection, or if it is that it gets resolved easily and quickly. I guess in general, that everything goes smoothly as possible and that we can go home sometime soon. Thanks!

August 11th, 2018

       We're in New York City still. We had been planning to go home Friday, but after some weird liver-function numbers and the start of some of the same side-effects I had during the first cycle of this clinical trial, we and the doctors were all more comfortable with me staying close by. Staying in NYC also means I can continue to get IV hydration over the weekend, which seems to mitigate the side effects too.

       I hovered near a fever last night so they ran some blood cultures this morning just to be on the safe side, but fever and cold symptoms are all noted side-effects so it seems pretty clear that's all I'm experiencing. Which doesn't really make me feel that much better physically, but it definitely beats actually being sick and needing further treatment for something like a cold or flu!

August 8th, 2018

By the time I paid attention to blogging, most of the really popular, successful bloggers I started following posted only once every month or two. These were long, usually a few-thousand-word posts that could easily be sermons or TED talks or chapters of a book. I missed the phase of blogging that started it all, when people posted regularly and often about their lives, about what they were doing, what they were thinking, even and especially if they didn't have answers to the questions they pondered.

I felt like my blog needed to meet the standards I thought was required of all blogs. I tried to write long posts weighted far more to the reflection and insight side of things, rather than the journaling and recording side. I've always wanted the theme of my blog to be cancer and faith and how those topics together intersect with other areas of my life. So that's what I've done. The problem is I only had so many grand insights that felt blogworthy, and I've since compiled these ideas into a book I'm trying to get published, so at this point I don't feel like trying to maintain a blog like that is sustainable.

But that doesn't necessarily mean I don't have any interesting thoughts or an interesting life, or at least, some things going on that might be worth writing about. So, after some time off with a bunch of complications from treatment(?) and who knows why else going on, I’m ready to get back into blogging. I've spent a lot of time rethinking what I want to do in this space, and I've decided to try to post much more often, with much lower standards for myself. I'm not going to worry about having a point at all, much less some sweeping new insight. I'm just going to record bits of what life with cancer looks like.

So today, I write this in my phone as I'm hooked up to an IV for hydration. I had a biopsy sample Monday, part of the protocol for the immunotherapy clinical trial I'm on. That biopsy involved heavy sedation, since they had to stick a big, hollow needle into my back to grab a piece of tumor tissue. Sedation meant nothing to eat or drink from midnight Sunday night until about 4:30 Monday afternoon. Which meant I got fairly under-hydrated. Perhaps as a result of that, some of my pancreatic and liver function numbers were off yesterday and I couldn't get treatment. Nobody really knows why these numbers have been fluctuating so much lately, but that seems to be my new normal.

I've had a bunch of IV fluids the last 24 hours yet somehow also lost around 2 or 3 kilograms (about 5-7lbs) since yesterday, again mystifying the doctors. It might be as simple as a broken scale yesterday, and while that's not especially likely it is more probable than me actually losing a bunch of weight overnight. But the important thing is my pancreas and liver numbers have dropped enough following hydration that I can get more of the clinical trial drug, which they're mixing up now and will infuse shortly.

It takes half an hour for the first drug, which hopefully boosts immune system activity, then a half hour break, then the actual immunotherapy drug, then a couple hours of monitoring and further hydration. It'll be a long day here at the hospital. I'll go back to The Ronald McDonald House tonight with a hydration backpack, which hopefully helps me avoid some of the complications I had during the first round of this experimental treatment. We'll see!

Feature in Notre Dame Magazine

I realized just now that I haven't ever shared here an excerpt from my book on cancer and Christianity that ran in the summer issue of Notre Dame Magazine. You can find it here!

Use the Bible Carefully

The US Attorney General and the White House Press Secretary both recently cited the Bible in defense of a new US policy to tear children from their parents at the southern border, so I can't really help but write something about that, and I encourage everyone reading this to speak out in some way against this as well, wether publicly or privately. (And my apologies for the formatting here; I'm doing this from my phone.)

All I really have to say is that just because something happens in the Bible doesn't mean it's a prescription for how we should act today. You can pick passages that support genocide against neighboring people groups, obeying the law whatever it may be because government is from God, and even dashing the infants of your enemies upon rocks, if you want to take Psalms literally. But you shouldn't.

That's missing the big picture and the overall message of scripture, and it's just blatant picking and choosing the bits and pieces you want.

And I will concede that we all are guilty of this at times. Everyone who takes Christianity seriously will inevitably misuse, misread, and misinterpret the Bible to bolster whatever view they already hold. We're separated by language, culture, and context, after all. It can be tricky to know how to apply the range of sometimes-contradictory teachings within the Bible. In the end, we all have to "pick and choose," and while there are better and worse ways to do that, none are perfect. But there's a serious and significant difference between doing so to help make the world a more inclusive and loving place--in the spirit of what Jesus said was the summation of scripture and the most important commmand--and doing so to justify the separation of families at a border or any other form of injustice and oppression.

This Is Who We Are

“This is not us. We are better than this. This is not who we are.”

I encounter these kinds of phrases just about every single day, and every time I do I get a little more irritated. Because actually, this *is* us. We aren’t better than this. This is who we are. It may not be who you thought we were. You may wish we were better than this. But that doesn’t change the truth.

We have to be honest about who we are, collectively. We can’t keep willfully ignoring what we’re doing, or at least what we’re all complicit in. We can’t continue to absolve ourselves with our self-righteous “we’re better than this” mentalities. When we see institutions we’re a part of doing harm, we can’t afford to pretend the problem is somehow not ours to deal with, act like we’re better than it, and move on. After all, I can hardly cure my cancer by saying “I’m healthier than this; this is not what my body is.” I have to be honest about it and do every kind of treatment imaginable to try for a chance at being cancer-free some day.

When churches harbor white supremacy, homophobia, sexism, and abuse, we who are Christians can’t just turn away and say “well, that’s not who we are.” It is in fact who and what The Church as a whole is, and we have to deal with that. When the United States adopts a foreign policy of “We’re America, Bitch!” and closes its borders to asylum-seekers fleeing domestic abuse, we who are Americans cannot pretend we’re better than this. We need to acknowledge that we’re all part of the problem, that this is in fact who and what we are right now, like it or not.

So let’s all stop saying “we’re better than this.” We’re not. Instead, let’s work to make it so that someday, we actually are better than this.

The Longer I Live, the Less I Remember I’m Dying

When I was diagnosed with DSRCT back in 2014, I did not expect to reach my second wedding anniversary. Now Christina and I have been married just over 5 years. In 2016 when some friends and I decided to plan for an annual Cedar Point trip, I thought “have fun; I won’t be there.” But next week I’ll make the third such visit to my favorite amusement park. My last three birthdays have all been pleasant surprises I did not expect to reach, and while I realistically shouldn’t give myself more than 50/50 odds of reaching my next one, it’s starting to feel more likely than not that I’ll actually make it to 27. Every time I pass a milestone I never thought I’d live to see, it gets a little easier to believe I’ll get to the next one and a little harder to remember that I am in fact dying.

And that raises some tough questions I can’t really answer. How much should I be mindful of my mortality? How much should I ignore that and just enjoy life while I still can? How much should I live every day like it’s my last, and how much should I plan for the future? I’ve been living with cancer for well over three years now. I can’t live a thousand days in a row like each is the last I’ll have. At some point I need to allow myself to think and plan at least a little more long-term than that. But I can’t pretend I have a normal lifespan ahead of me either. I don’t know how to balance that.

So sometimes I write furiously—hoping to get every book I’ve ever thought of out of my brain and into a word document—knowing full-well that the geologic pace of the literary industry means there’s little chance I’ll live to see any of my books get published. Sometimes I stop writing for a month or two, thinking it a waste of my limited time and energy to spend countless hours on something that’ll never go anywhere. I invariably wish I’d knocked out another book in that time though, and I always come back to my writing eventually. A few times over the last three years I’ve started searching and applying for real, steady jobs. Inevitably, before anything gets going I get a less-than-wonderful PET scan and change treatments. I only feel well-enough to be able to hold a conventional job when I don’t have many side-effects, and so far I only have minimal side-effects when my treatment isn’t really having any effects at all.

But maybe this is the right balance, if there even is a right balance. Maybe the best I can hope to do is whatever seems right at the time, knowing my circumstances and approach to how I spend my time will change in a week or a month or a year—if I live that long.

To Bake or Not to Bake? That Shouldn’t Be a Question.

Today’s Supreme Court decision regarding a Colorado bakery rekindled the national discussion surrounding the intersection of religious freedom and protection from discrimination. I know a lot of headlines simply said things like “SCOTUS sides with bakery,” but as I understand it the ruling had more to do with whether or not the bakers in question received a fair hearing from the Colorado Civil Rights Commission than if they have the right to discriminate against prospective clients. The decision even left room to say that a new impartial hearing could very possibly rule against the Masterpiece Cakeshop when all is said and done. Any final answer on this case could be years away yet. But I’m not exactly a lawyer and I’m not really here to talk about the legal angle anyways.

Instead, I want to discuss the idea of Christians who want to discriminate.

The proprietors of Masterpiece Cakeshop claim that their religion—Christianity—compels them to not make a cake for a same-sex couple. It's strange to me because my religion—also Christianity—compels me to denounce such behavior. I’d really like to ask them if they also believe their faith requires them to deny their services to anyone who is on their second or third marriage, or didn’t marry their late brother’s widow, or didn’t marry their rapist, or violated any other rule about marriage and sex found in the Bible, but that’s also not the main point I want to make here.

I mostly just want to point out how truly bizarre it is that people can claim to love a teacher who declared that loving other people is the second-most important imperative—preempted only by loving God—yet feel a need to discriminate and deny people access to their business. The teachings of Christ tend towards radical love that encompasses everyone and stands contrary to those who would draw lines of exclusion. Championing discrimination against LGBTQIA people is quite simply antithetical to Christ’s message of inclusive love. Whatever the eventual court ruling determines, it really shouldn’t change the Christian response to a gay couple who wants to buy a wedding cake. Christians should be at the forefront of inclusion, not the front lines of discrimination.

On Disability

      I plan to return to blogging on this site regularly again in the very near future, but for now I just wanted to share a piece I wrote on disability that was published here.

Good Friday

There is no Easter without today, Good Friday. Without the death and pain and isolation of the cross, there is no triumphant resurrection. And too often, we like to gloss over today. We like to skip ahead to the good part. As a kid I always thought it weird that Good Friday was celebrated on Friday evening, and then a Saturday evening Easter Vigil service just 24 hours later kicked off the celebrations of Eastertide. Wasn’t Jesus supposed to rise on the third day, not the very next day? It felt too rushed to me twenty years ago, and it does even more now.

Too often, I think we just aren’t comfortable sitting with tragedy, with death. We’d prefer to skip ahead to when things get good again. So we heap well-meaning platitudes on those who need to wallow for a little, and we force-feed encouragements to those who need to fast for a day or two. Sometimes there are no appropriate words though, and the most helpful thing we can do is to just sit with and be company to those who mourn, like Job’s friends did, before they opened their mouths and made everything worse. Many times, when tragedy strikes, words of encouragement or attempts to find meaning aren’t half as useful as simply being present, whether that’s physically visiting someone or letting them know you’re there for them, you’re thinking of them, and you’re available to talk when the time comes for that.

Now, Good Friday is not fun. It’s deeply uncomfortable, in fact. I get why we like to rush ahead and celebrate Easter as soon as possible. But I also caution against this. Life doesn’t fast-forward to the good parts. Sometimes we go through years of Good Fridays at a time, with no clear Easter in sight. We need to make space for that too, and not expect everything to be bright sunrises, blooming lilies, and bare, empty tombs by the next day. So this weekend, take a moment to sit with the realities of Good Friday before rushing ahead to Easter.

Warning: This Post has No Conclusion

I know conventional wisdom says to know your audience and say what they want to hear and have an intro, three points, and always, always a conclusion. But I just don’t feel like following that right now. I’ve started six or seven blog posts in the last month and I haven’t been able to finish any of them. They’re not assembling themselves into anything coherent and I just can’t seem to find a conclusion or a main point to any of them. They’re all rambling and disorganized.

I thought perhaps that might be useful though, or at least mildly interesting. Perhaps people might want to read thoughts that don’t have a tidy answer and might not even be asking a question. So here goes:

Too often, theological and secular responses to suffering focus on the periphery. Too often, when we ask why a loved one had to die, we’re more concerned with why we had to lose them, rather than why they had to lose everything. As we practice theology, as we seek answers for the hard questions in life, we find meaning that suits the people who are still alive. That makes sense, as the living tend to be the ones having all the conversations in much the same way as the winners write the history books, but the answers of the living invariably fail the dying, just as history books fail to accurately tell the stories of the people who lose.

Because of this bias, we get platitudinous answers that just don’t work if you’re dying, however slowly. They’re usually vague and unhelpful, something about growing through hardship, a door closing and a window opening, or what doesn’t kill you makes you stronger. Sometimes though, what doesn’t kill just leaves you weaker, a little closer to death. Sometimes, what doesn’t kill you simply hasn’t killed you yet.

But it will. Give it time, and it will.

There aren't a lot of warm, fuzzy sayings for that. There aren’t a lot of comforting theologies that acknowledge this reality. That’s probably because dying isn’t particularly warm, fuzzy, or comfortable. But if we’re going to talk about suffering and death in ways that don’t fail people experiencing pain and hardships and wondering if they’ll live through the next day or week or month or year, we’re going to have to get over that. We have to do better than saying “well, I’m sure your impending death sucks, but at least you’re becoming a better person through it, right? Every cloud has a silver lining!”

Fortunately, I think people are realizing this more and more. There’s a growing focus on actually letting people tell their own stories, and it thankfully includes letting those who are themselves dying have a greater platform to speak on death than people who have thought about it from a distance instead of experiencing it firsthand. It’s still annoying to see books on suffering written by people with incredibly privileged lives who haven't really experienced anything especially tragic or difficult, especially as I’ve been pitching my book on—among other things—why suffering exists for over a year now, but it’s OK, I guess. We're trending towards more Own Voices in literature and public discourse, and that's all I can really ask for.

See, I really don’t have a conclusion here. Maybe I’m just whining. I’ll let you judge that for yourself.

Where, O Death, is thy Sting?

We’re all going to die. This gets covered in detail on Ash Wednesday, and we The Church tend to think about it more than usual throughout the season of Lent, so I thought it an appropriate subject for today. Death is the inevitable result of life, and eventually it claims us all. But that’s not the real tragedy. What’s sad to me is that so many people fear dying, rather than look forward to it at least a little.

And I get it. Nobody knows for sure what happens when we die. Every religion (and lack thereof) is a faith, after all, not a set of certain, verifiable knowledge. There’s something undeniably scary about that. Death is unfamiliar and unknowable, and all too often death comes too soon, too preventably, and so senselessly that we are right to lament it.

I also don’t mean to suggest that I can’t wait to die. I love life. I will never have enough time with my wife, and there are dozens of things I hope to accomplish yet in this world. That’s why I’m putting myself through just about every kind of cancer treatment ever invented and trying experimental therapies still in testing in an attempt to buy just a bit more time. So it’s utterly and thoroughly untrue that I want to die, and the sooner the better.

Yet dying means an end to suffering. For me, it will bring relief from the grueling slog of cancer treatments I’ve endured for over three years. So it’ll be fine, though much more for me than for those I leave behind. Others will be heartbroken or at least a little sad. I’ll simply be at peace. I thought I was dying a few months ago when I triggered a Code Blue during an immunotherapy infusion, and my only thought in that moment was “they should probably just let me go at this point, rather than continue working to keep me around.” Not in so many words, perhaps, but that was the gist of it. I’m glad that was my reaction. I’m glad I’ve made my peace with the inevitable, should it come tomorrow or in twenty years.

Too often, Christians are absurdly fearful of death. It makes about as much sense to me as those who simultaneously fear “signs of the End Times” while hoping for a sudden deliverance from this world and all its troubles. Those of us who believe an eternal life with God awaits us after death should look forward to that. Sure, saying ‘see you later’ to those who go before us—or those we leave behind when we go ourselves—isn’t exactly fun. But they’re only temporary partings, and life eternal that’s free from sin and suffering sounds pretty great.

Gun Control

I’m not aware of anybody who thinks private ownership of nuclear warheads is protected by the Second Amendment. I also don’t know of anyone who wants to ban antique smooth-bore muskets. That’s probably because a single nuclear detonation in a major city could kill hundreds of thousands of people. A musket, not so much. So while the ongoing shouting match about gun control is often presented by gun control opponents as an unprecedented, all-out attack on the Second Amendment, the truth is we all understand and accept that the average citizen of the United States should not in fact have the right to bear any and all kinds of weaponry indiscriminately.

Gun control is really just a part of broader weapons regulations that we already have. It boils down to a question of how many people can you kill with a given weapon, and how quickly and easily. If we frame the discussion like that, I think and hope we’ll get a very different kind of debate, especially from those who declare themselves ‘Pro-Life.’ But I’m not going to hold my breath.

Ash Wednesday

I used to love Ash Wednesday, before I got cancer. Ash Wednesday always stood out to me as special. Apart from Good Friday, it’s pretty much the only day in the church calendar when not all is warm fuzzies and joy eternal. Ash Wednesday is sad. Ash Wednesday is real. It’s one of those very rare occasions when church not only allows us to be a little sad, but in fact encourages it.

I always loved that, because life is profoundly sad sometimes. People die. We all will die someday, every single one of us. We don’t remember that enough, and Ash Wednesday gives us an important reminder of the frailty and futility of material pursuits. Ash Wednesday is also a day in which pretenses of well-being are set aside and it’s alright to be flawed and mortal. On Ash Wednesday, Christianity can’t be abused to make false promises of health and wealth and every good thing in this life. On Ash Wednesday, we’re encouraged to remember that life is fleeting. I think that’s great.

I just don’t personally feel much of a need for it anymore.

I know I’m made of all-too fragile dust. I’m well aware that I’ll return to such before long. I haven’t been to an Ash Wednesday service since I got diagnosed over three years ago. Partly by default, since I’ve just not always been well enough to go to one, and partly I just haven’t wanted to.

If you know my story, you’d probably expect me to talk about my scars and how I don’t need ashes imposed upon my forehead to bear a physical reminder of my mortality. And that’s a good guess; I have over a dozen scars from various surgeries, after all. While they are pretty visible, and while they do remind me how close to death I have been and likely still am, I honestly just don’t notice them that much anymore. I’ve grown so used to them that every so often they genuinely surprise me.

Instead, how I feel is a much more brazen reminder of my mortality. Right now, I’m tired. I’m fatigued. I get light-headed and out of breath really, really easily. When my blood counts are down like they were this past weekend, I have to beware what I eat, who I’m around and if they’re vaccinated and healthy, and how often I wash my hands. Now, as my blood counts recover, I feel a deep aching in my bones as my marrow kicks back into gear. It’s not too intense, but it’s there, enough that I can say with reasonable certainty that my counts are recovering before my bloodwork results come in.

There are plenty of other non-physical reminders too. Heck, I wrote this post in the waiting area at the Memorial Sloan Kettering Cancer Center Pediatric Day Hospital, surrounded by a dozen other cancer patients, most of whom are younger than me. At the time I’m posting this, I’m waiting for the results of yesterday’s PET scan to know what the cancer in me has been up to these last couple months of chemo and immunotherapy. The days in which I feel well enough that I don’t experience multiple physical reminders of my cancer and the parade of treatments I’ve made it through are rare enough that they stand out to me and are themselves reminders too. So I’m intimately and intensely aware that we’re all dying one day at a time. And I could go into a dozen more ways my body sometimes feels like it’s slowly dying because of my cancer and the treatments I’ve needed for it—like mild neuropathy in my hands and feet or the many changes to my intestinal fortitude over the last few years—but you probably get the idea already. In short, each day provides multiple reminders that I’m mortal, that I’m dust. I walk through the Valley of the Shadow of Death every single day, one way or another.

If that’s true for you, then you probably understand why I don’t feel a need to spend an hour at a church service contemplating my impending death. I live that reality often enough as it is. But if you don’t—if your body’s wellness allows you to forget your mortality, your frailty, your dustiness—then try an Ash Wednesday service. I can’t imagine going through life without an awareness and appreciation of the fleeting nature of life. I wouldn’t want to take living for granted, forgetting to actually live while I can and postponing the important for a tomorrow that may not dawn. I’d rather know that I’m made of dust, and to dust I will soon return.

Don't Tell People How to Be

This afternoon I overheard a conversation between someone heading to New York City for medical treatment on the same plane as me and what appeared to be a family member or close friend of theirs. It was the kind of exchange I’ve seen and been part of too often the last three-plus years of my own cancer treatment.

“Stay strong; stay positive,” said the friend or family member.

The apparent cancer patient next to me grunted (in annoyance?) before simply saying “bye.”

Maybe they didn’t feel well and weren’t up for speaking more. Or maybe they felt like I do when people offer what they think is helpful advice or encouragement, but it happens to be about the worst thing you could say at that moment.

And, for me at least, the words “stay strong; stay positive" are at literally any moment more likely to piss me off than give me life. I know, it seems like I’m overreacting. And I am. I know people mean well. I understand that it’s impossible to know what to say to someone going through something you’ve never experienced. So when I hear “encouragements” like this, I usually don’t press the issue. I usually just ignore these kinds of annoying phrases and remind myself that it’s the thought that counts. But people should also want to know if they’re unwittingly hurting more than helping. And for whatever it’s worth, I find the imperative “stay strong; stay positive” deeply unhelpful.

It’s a phrase that assumes weakness and negativity. Telling me to stay positive when I'm already doing precisely that feels patronizing. I’m already being as positive as I can be. I don’t need to be told to stay positive, and I don’t need your pity and assumptions that I’m not, just because you don’t think you would be in my situation.

Imploring people to “stay strong; stay positive” also assumes that just telling someone to be a different way is somehow helpful and will enable them to be that different way. Suppose I am having a gloomy day or I’m feeling negative this week. What do you really expect?

Me: *is gloomy*

You: "Stay positive!"

Me: *magically isn't gloomy anymore*

Maybe this is a realistic outcome for some people, but I don’t know any of them. So don’t tell me how to be. I don’t need your opinion on the best attitude to have in my situation.

Instead, say things like "keep it up. I hope it goes well. Good luck. Thinking of you. Praying for you," if you're a praying person and they're someone who appreciates prayer. You can also acknowledge that life isn’t all positive without projecting your own emotions onto someone else. Depending on how close you are to the person, it's probably a lot more OK than you think to say "I'm sure it'll be tough, and I hope it goes as smoothly as possible".

It's alright to recognize that an upcoming surgery or another round of chemo won't be easy and might be impossible to stay positive during. In fact, it's a lot better than pretending everything is positive, everyone is strong, and forgoing real, honest relationships in favor of cheap platitudes and hollow encouragements.

x

I'm Believable

There’s a good chance you saw a story recently about Serena Williams and a frightening experience she endured last year, facing life-threatening blood clots shortly after giving birth. It’s a story that has sparked fresh disagreements about the many ugly facets of racism entrenched in so many of our systems, and it’s one I’ve thought a lot about the last couple of weeks.

For those who haven’t heard, I’ll give a quick version: The day after her emergency C-section she became suddenly short of breath and suspected, due to her history of blood clots, a pulmonary embolism. She asked for a CT scan and heparin drip but was given an ultrasound instead. It revealed nothing, and only after advocating for herself repeatedly got did she get the medical care she needed: the CT scan and heparin drip she had been asking for.

My first reaction on seeing this story was to shrug.

It just felt very familiar to me, and I'm sure it didn't seem all that unusual to many who have spent a good deal of time in a hospital setting. Medical professionals constantly have to judge whether a patient knows what’s going on in their body and can be trusted, or if they exhibit hypochondria or have spent too much time on WebMD. That’s not an easy assessment. And I think most people can agree that if there’s any doubt, it’s better for medical professionals to follow protocol and go with what they suspect, rather than follow what a patient thinks they know.

I’ve been through a couple similar episodes. I’ve asked for more hydration, well beyond what I should need for my height and weight, and not gotten it until there was a shift change and I had different people in charge of my IVs. I’ve also asked to have my hydration slowed and gotten a 2 liter bolus instead, based on the numbers of my urine output rather than how I was feeling. I gained a bunch of water weight and my legs swelled up significantly. I’d still prefer the people caring for me to follow established protocols, rather than pay too much heed to my semi-coherent ramblings when I’m on multiple painkillers and do the wrong thing because I thought I had a hunch about what I needed. To an extent, these kinds of events are inevitable and will always be a part of medical care.

So I truly understand where people are coming from when they dismiss Serena Williams’ story as an anecdote that could happen to anyone, rather than an example of racism at work in our healthcare system. I was tempted to agree at first. It is an anecdote. These types of events do happen to anyone. They always will to some degree.

Then I thought about this story for a minute.

Enough anecdotes pooled together can point to statistics. Sobering statistics, like the fact that black women are three to four times more likely to die from childbirth than white women in this country. We can debate why that is, talk about risk factors, discuss the systemic racism that contributes to these risk factors, and probably argue over a host of other topics related to this that I, a white male, am terribly unaware of. The fact remains that Serena Williams was very nearly another statistic, another black women who died from childbirth, and at least in part because she was not listened to.

So was Serena Williams not listened to because of racism, as many suggest? Honestly, I don’t know. It’s certainly suspect that a top-tier professional athlete—someone who doubtless has extremely well-developed bodily awareness—wasn’t listened to more. I have a hard time imagining Tom Brady being ignored by his doctors. It strikes me as suspicious that someone with a history of blood clots wasn't heeded more, too. But I wasn’t there. I don’t know all the circumstances around this story. I don't know the doctors, nurses, and others responsible for her care, and I don’t know what the protocols are for C-sections or post-surgical blood-thinner regimens for people with histories of blood clots.

But I do absolutely believe that, when medical professionals make their judgements of whether or not to believe a patient—whether a patient knows what they’re talking about or should be ignored in favor of following protocol—race plays a role. I don’t doubt for a second that black women are, as a whole, listened to less than, say, white men. This is true whether or not Serena Williams was herself a victim of racism following her C-section, and it is true whether or not such events happen to other people. As I said already, I’ve had a couple experiences in over three years of treatment when I was not listened to initially and advocated for myself several times before I finally got what I needed.

And yet I’ve had only two such instances that I remember. In over three years. I’ve also been believed hundreds of times in that same period, for relatively minor issues like hydration and a host of other, more serious matters. Like the time the space surrounding my lungs filled with over two liters of fluid and I could hardly breathe, and I said I had fluid that needed to be drained, and they drained it as soon as possible.

I don’t doubt for a second that my being a white male makes me more believable in the eyes of many people, medical professionals included.

Prejudicial Awareness

I’m back on some pretty intense chemotherapy now. It tends to weaken people’s hearts, so I can only have one more round of it before I reach my lifetime limit. I also need to have an echocardiogram before I start each round to make sure my heart is doing alright. So far it’s been fine, but it’s best to be prudent. My hair is pretty much gone now too. It’s not exactly the ideal time of year to go bald and I didn’t realize just how insulating my beard was until I lost it, but it’s alright. I’m really not having too serious or debilitating of side-effects right now, and I know all too well that it could be much worse, so I won’t complain.

Now that I’m bald again, I look like a proper cancer patient. Anyone who looks at me could pretty easily make that judgement. This wasn’t the case last year, even though I had a bunch of chemo, an experimental clinical trial, and a handful of surgeries in 2017. None of it took my hair though, so you wouldn’t have judged me as a cancer patient on looks alone. And you’d have been very wrong.

That’s ok. It really didn’t do me any harm.

That’s just not the case with a lot of judgements. It’s not the case when judgements are informed by prejudice and it’s especially not the case when judgements informed by prejudice are accompanied by an imbalance of power.

Now, it’s impossible not to hold prejudices. It’s difficult to even become aware of all our prejudices, much less rid ourselves of them entirely. It’s also impossible not to make judgements based on appearances. I’m not even convinced that it would be entirely beneficial were it possible. Judgements about whether or not others appear like they could use a helping hand aren’t exactly terrible. Not all the time, at least.

That’s why we need to become more aware of our prejudices. We need to acknowledge when prejudices misinform our thinking so we can combat them and change our outlook. We need to be vigilant against ourselves, to take a step back and rethink everything when we realize we allowed prejudice to alter our view of the world or others. And we need to humbly listen when other people try to make us aware of our prejudices. Claiming reflexively to be the least-prejudiced, least-racist, or least-biased person around just reveals how little we understand these issues. Let's all stop being so offended by charges of racism, prejudice or bigotry, and start being more offended by these things themselves.