High and Low

It’s happening! Right now, this very instant, the first giant tubes of chemo (with an appropriately sinister nickname of “Red Devil” for both its wicked side effects and the color they say it’s about to turn my urine) is pumping through a tube into my chest. I waited 56 days, 1 hour, and 38 minutes to begin treatment for cancer after a Doc told me for the first time that I had the stuff, and the wait has finally ended! This is kind of messed up, but I’m actually excited to be here slurping up my poison through my fancy new “technological enhancement” as I call it, or “port” as the rest of the world lamely describes it.

The pale, hairless, and sleeping (I hope…) people around me, though, are serious buzzkills. They look like cancer patients on chemo; solemn, pasty Ghosts of Christmas Future just lying there as Emily and I are over here grinning like idiots into our phones taking selfies with duck lips, which I didn’t realize until just now I’ve never before attempted and am poorly prepared to execute (I have no lips!). But hey, what the hell, you only get one first chemo appointment in life, and we’re gonna’ make the most of it. I even wore my new “chemo shirt” that Emily bought me, despite the fact that I’m convinced she just re-branded a women’s breastfeeding shirt. Luckily there are no hungry babies around here with big ideas.

And the soundtrack to Chemofest 2019? Empire of the Sun is opening us up with “High and Low”. Listen to it, and you’ll know exactly how the first day of chemo feels. It’s such a good song, and it perfectly describes this whole journey. It’s all just highs and lows, and the fun part is that you never know what you’re gonna’ get in a day. It’s Forrest Gump and his box of chocolates. Sometimes you even feel both high and low at the same time, which I didn’t know was possible. It’s probably a lot happier and more energetic song than this saddest of places deserves, but dammit, it just feels so good to finally be doing something about the cancer, even if it’s gonna’ make me lose all my hair, pee bright red like I just left Chernobyl, and, (the least cool of all the side effect of all) give me leukemia in 3-5 years.

Today I’m thankful for the highs and lows and the everything in between. I can remember having climbed 25 different mountains in my life, some of them a few times, and I’ve been scuba diving and looked down over a wall that plunged 3,000’ down into the depths of the earth, and in between those two extremes I’ve seen and continue to see so much radiance, beauty, and love here on Earth. Even the pitiable forms that only slightly still resemble people lying in their recliners next to me and which I am destined to become still retain the image of our suffering God; He was, after all, a man of sorrows, and acquainted with grief.

I don’t know what it is about running a liter of death into your veins, but there’s just something about it that makes life seem awfully sweet. I can’t wait to get home today and see Nora and Wyatt. I can’t wait for the fall and I daydream about the first time a tone drops when I get to go back to work and drive big red fire trucks again. There’s so much good coming as we're running life full tilt at its most absurd.

Home

That which contracts has surely expanded.

That which grows weak has surely been strong.

That which fades has surely been bright. – Tao te Ching

He has made everything beautiful in its time. - Ecclessiastes 3:11

Our birth is but a sleep and a forgetting

The soul that rises with us, our Life’s Star

Hath had elsewhere it’s setting,

And cometh from afar:

Not in entire forgetfulness – William Wordsworth

He has put eternity into man’s heart, yet so that he cannot find out what God has done. – Ecclesiastes 3:11

Home. That’s what I’m thinking about. Home. Not bricks and mortar, much as I do love that place. No- home. You know what I’m talking about. That nagging sense that there is just some thing, some place more that we used to know and to which we’ll one day return.

And here’s what I’m thinking about home: if we all know this longing for it, then we’re just not of this world. Our souls come from a better place. I don’t know what part of us retains this fuzzy memory of somewhere else better, but we all know it, don’t we? It must be the radiance, the very joy of the Trinity. You can’t ever forget it once you’ve known it, and we’ve all known it, so that longing for home never disappears so long as we’re away.

 This sense of a long-lost joy has to be theophany- God making himself known. This is surely the eternity that He put in our hearts- his own joy- and it has made us beautiful for a time. He must delight in this. He’s so playful, isn’t he? He hides the most infinite thing, eternity, right in our fragile, finite hearts and the keys to wisdom in the hearts of children- the least (or most?) wise of people.

We’re away from home for now. We’re sailors weary of an all blue horizon, travellers who miss the home cooking from their place, displaced exiles wandering looking for belonging for too long. Chemo coming on Monday and my arm still hurting from surgery Thursday and Nora crying when I tell her I’m going to lose my hair all remind me that things are not as they should be. But we’ll return one day. To home. That which contracts has surely expanded, and will expand again. Beauty‘s time will return. The soul that has risen with us will rise again, and the eternity within our hearts will see us back home.

I know this is true. But for now, I just miss it. I miss home.

A Very Dr. Seussical Cancer

I’m just gonna’ leave this right here...

It came for me one August day 
In a town called OKC. 
Cancer was callin’ my name, 
It said “hi” to me. 

We’d seen a bunch of docs already, 
Figurin’ just what was wrong. 
I’d become so short of breath, 
I could hardly get along. 

Well that was just the beginnin’, 
Of scans and sticks and draws. 
The docs, they kept on orderin’ them, 
To find out all my flaws. 

‘Till one day they saw a tumor, 
On an x-ray of my chest. 
What the heck is that thing there? 
They didn’t have to guess. 

Lil’ man’s name is Timmy Tumor. 
He’s my little passenger. 
He’s closer than my family is, 
Inside me, as it were. 

But Timmy is a menace! 
He makes me feel like shite. 
For such a very cute lil’ thing, 
He’s just not very nice. 

So he will have to go now - 
It’s non-negotiable. 
But I can’t just simply kick him out - 
It’s become intractable. 

And now fin’lly the docs agree, 
Say Timmy has run his course. 
We’ll surgically remove him soon, 
If needed, use some force! 

But the first step is to sit here, 
Poison drips into my vein. 
Mourning my beard that soon will leave, 
And fanning hope for gain. 

Like one day this’ll all be gone, 
I’ll return to normalcy. 
This will all feel like a dream, 
End of February. 

I’ll be back on top of mountains! 
I’ll drive red fire trucks! 
I’ll climb my stairs without the huffing, 
Feel like a million bucks! 

I’ll be back up on that horse real soon, 
And you’ll all come to see, 
There was a reason for the troubles, 
That did just come to me. 

You’ll view the love and peace and joy, 
That came to many lives, 
Even in midst of strife and death, 
As I strove to survive. 

So hopefully that is a “why”, 
In the midst of my present plight, 
That pulls me across the finish line, 
And sustains me through this fight. 

Cause I don’t know how much it’ll take, 
Seein’ through to the end, 
Till things are back like they should be, 
Healed body on the mend. 

Obviously my mind should not be left unsupervised at odd hours of the night after reading Dr. Seuss to Nora and Wyatt at bedtime.

How you can help

So many of you have asked how you can help, and now we finally have tangible needs coming up! Our plans have changed, and Levi will be getting a port placed tomorrow to be able to start chemo Monday in OKC. We are so glad to be able to be home for the first round of treatment.

If you would like to bring us a meal or sit with Levi during his treatments, I've created a signup below. The meal schedule goes through the end of October, which includes two rounds of chemo. We don't yet have appointments scheduled for the second round, but I will add visiting hours once I know when he'll have the treatments. Please read the instructions for chemo visits before signing up.

The chemo visiting schedule is limited to allow Levi some downtime while he's there. If you're not able to make a visit to the hospital or if the visit slots are full, I'm sure he would enjoy visiting with you at home on days he feels up to it. Send him a message, and he will get back to you when he is able.

Thanks in advance for all the help! We love all of you!

Click here to sign up

The Bear Trap

My first infusion of chemo is coming up on Monday, and I’m wondering what it will be like. On the outside, I know I’m going to sit there calmly and probably joke about things to defuse the gravity of what’s happening to me and I’ll appear just fine. But what does this process do to and on the inside of a person? I don’t know yet.

I’ve thought about a lot of high-minded ideas lately, but I think that this is not going to feel like that at all. When the idea of chemo becomes the reality of chemo, I think it’s going to feel brutish and primitive, calling out survival instincts that have been buried deeply within me. It’s going to feel primal- a creature gnawing its own leg off to escape the bear trap. I think it’s going to be the beginning of a life and death struggle that’ll take everything in me just to finish and will leave me changed and scarred in ways I can’t yet anticipate. Gulp.

But still, there’s hope that this thing can turn into more than just the steaming pile of suffering it looks like, just as (excuse my nerdiness) Gandalf said:

“I wish it need not have happened in my time,” said Frodo. “So do I,” said Gandalf, “and so do all who live to see such times. But that is not for them to decide. All we have to decide is what to do with the time that is given us.”

I've had some good coffee this morning and the sun is shining and I feel like living dangerously today, so bring it on and we'll see where this road leads. That's what I'm gonna' do with my time.

Another day, another thoracentesis

Levi's begged me to take pictures every time he's had a thoracentesis so that he can see what it looks like, but I've always been too afraid to ask the doctor's permission, assuming the answer would be no. Well, that was no problem for Levi's mom when she accompanied us to his last appointment, so now you can, like Levi, thank her for these shots.

He had the procedure repeated today, 12 days after the last time. From what he says the only pain is from the numbing shot. After the shot, a tube is inserted into his back, and the other end is stuck into a vacuum-sealed jar that sucks the fluid from his body. They regularly drain 1500-1800 mL (shown below) every two weeks.

This short post seems like a good place to document a few of the details we learned last week during our appointments at MD Anderson.

• The yellow color of Levi's lung fluid is normal, which was very encouraging to our Dr. He explained that cancerous fluid is usually blood-colored, and the fact that Levi's is normal seemed to give him hope that Levi's cancer might be more curable than that of others with adrenocortical carcinoma (ACC).
• ACC is an especially "sticky" form of cancer, so it is very difficult to remove from any organs it attaches to, and it is very difficult to kill.
• Depending on how much the tumor shrinks with chemo and whether or not it is actually touching any part of Levi's kidney, his kidney might be able to be saved and just the adrenal gland be removed. 
• ACC tumors are highly metabolic, which accounts for Levi feeling hot all the time. This is also likely the cause of his occasional flu-like symptoms that couldn't be correlated to anything else.
• Adrenal tumors can be functioning or non-functioning, meaning they can produce hormones in addition to the hormones produced by the adrenal glands. Levi's tumor (Timmy, as he affectionately calls it) is functioning, but it is only producing cortisol, which explains his increased blood pressure and heart rate. 
• Levi won't be able to take anti-inflammatory drugs like Ibuprofen or Aleve while he's on chemo, which may be difficult, considering these medicines have kept tumor-causing back spasms at bay, allowing him to sleep more than a few hours at a time for the last year. The chemo itself is supposed to have incredible anti-inflammatory effects, so we're hoping that will take care of the pain. It's nice to finally know what's been causing his nighttime back pain for so long!

Lost Things

It feels like I lost a lot yesterday. Things don’t appear neatly contained and packaged, their edges are no longer crisp and in focus. Right now they’re just fuzzy and undefined and unsettled. Honestly, I’m struggling even to contextualize what happened in the last few days and present it in a sensible manner.

I met a man yesterday whose job it is, who I am paying, to try his damndest to kill me. This oncologist designed a lethal cocktail of four poisons and a whole elaborate schedule just for Mr. One-In-A-Million here. He presented to me and Emily in very polished and professional tones, writing on the butcher paper of the propped-up head of the exam table in his very left-handed manner the names of the drugs and the time tables and a nice little graph at the bottom to show how my physical ability to handle the devastation he’s about to unleash on my unsuspecting body will evaporate over time. 

And I just sat there gazing out at him with a vapid expression on my stupid face nodding my head, completely unable to grasp that this is ME we’re talking about when he says he’s not sure he can cure me or discussing my left kidney’s prospects for continued existence or my ability to have kids after his Kevorkian-esque work is concluded.

And as if that isn’t enough, another, different type of chemo pill is currently making it’s way through the Postal Service to my home. So Death is supposed to arrive come rain or shine on Tuesday through my mail slot as well.  If I knew an assassin were driving towards me with a bullet with my name on it (he’s a very dramatic assassin), I’d be running away from that Death, right? But here I am leaning into this insane thing. Where do you find sense in this absurd act? I haven’t figured it out yet.

Emily and I were both just stunned for a few hours after the appointment. There’s a tropical storm camped out over Houston right now, and we walked out of the windowless exam room in which my fate was delivered to find fat raindrops scurrying down the large windows of the seventh floor waiting room on their way to contribute to the floodwaters gathering below. The rain, the darkness outside, our sadness, and the fact that we were now about two hours past lunchtime (forget about naptime) all seemed to be conspiring against us. We were stunned, hungry, and a little surprised that this particular Doc, who we’ve begun referring to as the Wizard Behind the Curtain because he’s one of the top two or three specialists in the world for adrenocortical cancer (“ACC” for those of us in the biz), was a lot more honest about the difficulty of defeating cancer than any doc has been previously. We were not in a great place.

I didn’t really expect this doctor’s visit to stun me like this, so I was caught off guard and I still haven’t been able to reorient myself to reality. And as I try to figure out why I was hit so hard by the news that I would be imbibing these particular medications in these particular doses for this particular number of weeks, I think it can only be because the blinders were just ripped from my eyes.

You see, I’ve been hoping for the best since my diagnosis. Since you’re watching all this go down from what is hopefully a much more objective standpoint than me, you all probably found it much easier to visualize the reality of how this is going to play out than I did and knew this all along. But while you’ve already probably wondered what Levi will look like without eyebrows, I’ve been busy telling myself that I’ll probably just be put on some immunotherapy that won’t really have any side effects besides fatigue and it’ll probably only be for a very short time because my body will respond in a best case scenario kind of way and everything will be all rainbows and unicorn sharts. Today, though…shit. That’s not what’s going to happen.

I may be a special unicorn, but that doesn’t mean I’m exempt from any of the suck of cancer, or of life, as proven by the unique opportunity to double down on two chemo treatments at once, one of which was described by my Doc as “not an easy chemo” and which he likes to give with one week less recovery between bouts in the ring than most oncologists.

And it turns out that this naiveté isn’t the only thing I’ve lost or will lose. Because that’s what cancer does - it takes things from you. It takes them one at a time, but very steadily and it never stops. That’s why everybody is so damned afraid of it. We’re just afraid of loss. With cancer you lose plenty of physical things like hair and weight and kidneys, and these are bad enough. But what cancer really takes, and what everybody fears, are the internal losses. It damn sure takes your ego. It takes your dignity. It takes your privacy. It takes your sense of purpose and your work and, maybe worst of all, your time. It takes your identity - your masks - and if you’re not careful it just keeps right on taking and taking until it swallows up even the memory of you. And today it did just this- it took.

So now I’m sitting here blindsided and shell-shocked with a high-pitched whine in my ears, surprised to be seriously contemplating my own mortality and trying to make sense of the insensible. I’m asking myself, “could this be the end of my story?” For the first time in my life, and in a way that I don’t think any person can until the Grim Reaper has taken a long hard gander at them, I truly believe that the answer is yes. And the sudden intrusion of this weight onto my shoulders feels like loss of innocence. God, if I could only rewind to yesterday. But there’s no turning around once you start down this road. From this vantage point, the only way to life sounds a lot like death. But then, I think I’ve heard those words before. “Whoever would find his life will lose it.” So if that is true, then maybe loss isn’t the exception to the rule? Maybe loss IS the rule?

If this kind of upside-down logic that says losing life is the only way to find it is right, and if the nature of things makes loss the rule, then I can only conclude that life is the rule of things. And that means that all of the loss happening in my life right now, all of the things cancer is taking, somehow produces life too. Shalom, flourishing, is blooming.

And if this is the case, then there’s only one appropriate course of action: lose and live with abandon. Grab onto life with a big bear hug and squeeze until its eyes pop out. Walk right to the edge of that cliff and look over just to see what’s there. Go about life as though this is my one shot at it, because it is. After all, there is no preparation for something else. The chips are down, I’m all in, and, come hell or high water, I’d better be in it to win it, be it for months, years, or decades more.

That’s my plan, anyways. I’m taking in that loss and turning it back around to life. If I just keep doing that, cancer can win the battle but not the war. It’ll take and take like it does, but the loss of my things will never compare to the beauty that comes out of this. It’s like I’m standing too closely to a pointillism painting so that right now I can only see individual dots and the larger, more perfect picture is obscured from view by my very proximity to it. Yesterday was a shit day, no doubt about it, but the sun came up again this morning.

And the fact that this keeps happening makes me wonder: in the midst of so much loss, am I swimming in a sea of life and beauty right now and don’t know it?

I think maybe so.

A Hard Day

Today was a hard day. For the first time a doctor told us he may not be able to cure Levi's cancer. That's never been a tangible option in our minds (though obviously we have considered the theoretical consequence of death due to cancer). This new reality comes alongside a rigorous treatment plan that does have the possibility of successful results. 

Starting sometime next week (ASAP, pending insurance approval) Levi will begin what the doctor explained as "not easy chemo." It will be a 21-day cycle that starts with 4 days straight of infusions followed by 17 off days before beginning again. Each cycle will have more intense side effects as the drugs compound in his system. While taking this chemo regimen he will also be taking Mitotane, the pill form of chemo prescribed by the endocrinologist yesterday. Double chemo, yikes. 

The chemo will be working to shrink his tumor, which is currently very close to a large blood vessel that supplies his intestines, making surgery risky. After two rounds of the chemo regimen he will have imaging done to see how the tumor is responding to treatment. If it's responding well then he will have another two rounds of treatment. At that point they will take another look at the tumor and either recommend surgery or another two rounds of treatment. The max is usually six rounds, due to the intensity of side effects. Levi may not even be able to endure more than four rounds, depending on how he's tolerating them. 

The chemo should also work to treat the cancer on his lung, which will be monitored alongside the tumor shrinkage. Once the tumor is removed, the doctor will decide what's next. It's hard to estimate a timeline on all of this, but the best case scenario we can figure out at the moment is that he'll be through the chemo and surgery/recovery by about February.

The current plan is to do the first round of chemo in Houston so we can start next week (before we can get in to see the OKC oncologist). Then future treatments will be done at home, making this easier on all of us. 

While the doctor may not be able to cure Levi, we know God can. Pray with us that He will. 

The "before" picture. We were very glad to finally be at the appointment we've been waiting for. I didn't capture the after, but it's safe to say it wouldn't have been as happy.

The complicated treatment plan reduced to notes on an exam table.

Cancer's 5-Letter Word: CHEMO

We saw the endocrinologist today. Honestly, we were surprised by how much we learned. We expected to get some blood drawn and be told that she'd evaluate his hormone levels to see if they needed altering, and we would go on down the road. Instead, we got a big dose of reality.

Almost immediately, the doctor prescribed Cancer Drug #1: Mitotane. Mitotane is a pill form of chemo that specifically targets the adrenal glands. It's used in conjunction with regular chemo (or some other type of systemic cancer treatment), and it affects both cancerous and healthy cells. That means that both of Levi's adrenal glands will be affected, not just the cancerous one.

Adrenal glands mainly produce 4 hormones: aldosterone, testosterone, epinephrine, & cortisol. The cortisol, in particular, is responsible for maintaining many life-critical functions such as blood pressure, blood sugar, and metabolism. When Levi starts taking Mitotane, it will basically try to kill the adrenal glands, which will tank his hormone levels. Therefore, he will also have to take hydrocortisone to replace the mission-critical cortisol. After all this is over, he may have to take hormone replacements for the rest of his life, depending on the level of damage to his healthy remaining adrenal gland.

Tomorrow we meet with the oncologist to get a plan for the systemic treatment (likely regular chemo, according to the endocrinologist). The chemo + Mitotane will work to shrink Levi's very large tumor prior to surgery in order to ensure a more successful removal. We don't yet have an expected timeline for shrinkage and surgery, as it's dependent upon the cancer's responsiveness to treatment. We're hoping the oncologist can shed some additional light on a ballpark timeline.

Today's visit made all of this so much more real. There is a cancer drug that will be arriving in the mail by mid-week next week. We're about to launch into an even more difficult season, and there's no way to prepare ourselves. We're so glad to have such a great community of friends and family who guarantee we will not go through this alone.

We found ourselves in the eye of Tropical Storm Imelda today. How fitting. We weren't prepared for this literal storm, just as we aren't prepared for the coming storm of cancer treatment, so we had to find our way to CVS for emergency umbrellas.

“So what’s it like having Stage 4 Cancer?”

Nobody has asked me this question. I’m going to answer it anyways, though. Maybe you’re all afraid the answer will just be depressing and you don’t want your day being pulled down into the gutter like that (if so, read on. It’s not nearly so depressing as you might think). Or maybe you don’t feel like the Earth stopped turning on its axis on August 5^th like I do, so your life goes on and you’re not quite interested enough to risk a long and possibly emotionally draining conversation like this. Either way, I don’t really blame you. But a few things have been on my mind as of late and I thought I’d share, for whatever that’s worth.

In a word, having Stage 4 Cancer is weird. Like so many things in life, nobody ever expects cancer to come visit them. For most, it’s a terrible but distant thing that provokes tears when the commercials come on TV begging you for money to help bald-headed kids in wheelchairs. Maybe you know somebody who had it and you watched them wither away, so you’re pretty convinced it’s bad mojo. When cancer is kept at a suitably safe distance like this, it seems sort of manageable in a way.

But let me tell you, when it’s YOU with the cancer, now that’s a weird experience. Suddenly you’re thrust into the spotlight and cancer doesn’t feel so manageable. In fact, in the space of just a few hours surrounding your diagnosis, life itself starts to feel a lot less manageable and weird things start occurring. Doctors become very responsive, even returning your calls long after business hours. I knew it was bad when the Doc began a phone call with, “So Levi… how are you feeling?” You see strange sights, like a man boarding an airplane wearing a live dog like a scarf (no, really this happened.) You start to see pity in other people’s eyes, and every interaction is soon colored by the question, “do they know about it?” And you slowly begin to realize that this is going to color everything and nothing remains certain. All of my financial plans I’d so carefully laid were now totally up for grabs. Since I’m hopelessly vain and care a little too much about things like staying in shape, I began to realize that controlling that would probably soon fly out the window too. Vacation plans: gone (too bad I’d just used up all those vacation days on a climbing expedition in the Alaska Range). But after all the confusion and swirling and shell-shock of the first few days, things settled down and I began to notice a few things.

The first thing I saw is that cancer shatters your identity. I think God had been preparing me for this for a long time already, though, as I’ve been stumbling on books that obliquely address this subject one after another for years. It’s been a theme and topic on my mind since, strangely, about the time the Docs say Timmy Tumor began growing. Anyways, what I’d begun to realize is that before you have cancer, it’s so easy to hold up all of your masks. You’re this person with one particular group of people, maybe that person with another group. These masks are personas that you’ve created and worn so long that you couldn’t put them away if you wanted to, which you don’t. You don’t even realize they’re there, so comfortable and familiar have they become.

And then cancer goes BOOM and drops the mic in your life and suddenly those masks are so, so woefully inadequate. For starters, you can’t hide your weakness, which has surely been an integral component of all of your masks. You can’t hide that your body is broken and you are NOT in control of jack shit and things are not all hunky-dory in your life. Everybody knows that things are unraveling in unexpected ways and that you probably aren’t handling it well. Any pretense of competency or capability is gone.

And when the masks are gone, what’s left? Just… you. All of a sudden I don’t care to define myself. I don’t care what people think in a way that I never could have before cancer. We hold on to our identities so tightly that we can’t let go of them until we’re forced to do so. It took cancer for me.

And speaking of things to which we cling to every-so-tightly: how about the idea that we’re never going to die? We avoid confronting this truth like it’s Ebola even though we all know it’s true, and this is a great tragedy because Death is a great teacher. Not only do we never talk about it with others, but we even try to hide it from ourselves! It’s a grown-up Santa Claus of lies - if everybody is in on it, then it must be true, right?

And then one day cancer brings you face to face with your own mortality, and Santa is no more. This might not seem like a surprising side effect of any disease, but in my case it was. You see, I have never, at any point, thought that this would kill me, so I don’t know why it should have me thinking about Nora walking down an aisle in a church somewhere with some other guy giving her away. Some people get cancer - the pack-your-bags and see-a-lawyer-about-that-will-you-never-got-around-to sort of cancer. But what I have has never felt like that. My cancer is localized in a big tumor and only one spot on my lung, and the Docs say it’s very treatable.

Then again, maybe they’re telling the cancer patients the same thing… now there’s some food for thought…

Anyways, whether it’s just naiveté or not, I’m not worried this is the end or anything. It feels more like a bump in the road - an inconvenience that we’ll make it through. And yet. there’s that thought. That thought that’s firmly planted in the back of my mind that I don’t listen to but never goes away that says, “but what if this is it?” What if this is how my story ends? It’s a shitty ending, really. Totally unoriginal. He died of cancer. Oh how sad - he was too young, yadda yadda yadda.

Anyways, the fact that my non-cancer cancer has me thinking occasionally about whatever happens when you decide never to take another breath isn’t the only surprising side effect. It’s funny how being told you have a disease that kills lots of other people, even if it isn’t likely to do so to you, pulls your focus into the now. It’s just like Tim McGraw singing about going skydiving and rocky mountain climbing when a diagnosis comes along (Although, full disclosure, my reaction to the diagnosis was less noble and involved Insomnia Cookies and Netflix with the Mrs. Already done the skydiving and climbing, I suppose…). In its own way, cancer is a real blessing because it makes you realize there’s no guarantee that another breath will follow this current one, or that the complex electrical circuitry in your heart will ever fire again. This has always been and always will be the case for each one of us, but somehow I could never get that fact through my thick skull until it forced its way in.

And in this state, where life is more clearly defined by its antithesis, everything becomes much clearer. I think maybe this is the great gift that cancer gives. It’s harder to get worked up about dumb stuff. It’s easier to enjoy the little things. It’s easier to love. Your awareness backs up from the zoomed in field of exposure with which you’ve always limited yourself and suddenly you see the bigger picture, full of radiance and beauty. The old people with their big ears getting together at Starbucks just to talk - that’s beautiful. Light itself and the way it plays underneath the whispering leaves of an oak while you’re walking the kids home from school - that’s beautiful. Even the crap stuff is beautiful and radiant just because it IS. It’s like the part about creation in the Jesus Storybook Bible that I read to Nora and Wyatt all the time that says God loved His creation and it was lovely precisely because He loved it.

But lest you think this has all been a pleasure cruise for me the last five weeks, let me just acknowledge that I know suffering is coming. I don’t even have a treatment plan yet, so there’s no telling just how terrible I’m going to be feeling in the very near future. Do pregnant women feel this way as they approach the due date? I know that the suffering coming my way is probably, at least physically, going to bring me to my knees. I’m probably going to feel worse, and for a longer time, than I ever have before. Everybody knows that cancer sucks, and that is not lost on me. It’s likely that I’ll feel overwhelmed, exhausted, and inadequate to even survive this at points. Cancer is scary as hell, and the treatments are even more frightening.

But what is a guy to do? I can’t live in a state of perpetual fear of this unknown. That would suck even more than the cancer. So for now, I’m getting up each day and doing the next best thing, again and again, until it’s time to sleep again. And life pretty much rolls along just like it always has, for everybody, ever since we homo sapiens started doing our Thing. And that’s what it’s like having Stage 4 Cancer right now. 

P.S. - As an added bonus, here are a few pro tips about having cancer from a guy who is so early in the journey that he has no business dispensing such advice:

- Most importantly, be sure you have a satisfactory answer for the question, “now how are you feeling?”. You will receive this very heartfelt question many, many times per day, and on each occasion it will be delivered very sincerely. Remember that, even though you may have answered this question as genuinely as you can so, so many times that day, your interlocutor wasn’t there for any of these dress rehearsals and deserves an honest response.

- Don’t miss the opportunity to enjoy telling people you have cancer. Nobody knows how they’re supposed to react when somebody close to them drops such a truth bomb, so things are going to get messy and awkward when you do so. Savor their awkwardness and don’t be afraid to toy with their attempts to find the right words. After all, the situation is so shitty that, you have to admit, it’s a little funny…

- Enjoy getting the chance to talk to all of the people you haven’t heard from in decades. Every person you haven’t even thought about since high school will be getting in touch. Take advantage of it.

- Take up something new. You’re going to spend a lot of time waiting in doctor’s offices, labs, and the like, so you might as well find something kooky to do with that time. My brother basically dared me to take up whittling. I think this was just to see if he could turn me into some version of Clint Eastwood in Gran Torino, and it’s working. I have a fine collection of carved trolls and wizards now. Don’t whittle in a doctor’s office, though. That’s crossing the line, bro.

- Use cancer for the Ultimate Trump Card that it is only sparingly. For example, when your wife asks you to say, take out the trash, you should do it if you really are feeling all right. Don’t be a cancer jerk.

- Since you’re probably going to be on one hell of a weight loss program soon, take this opportunity to fatten up. Add heavy whipping cream to everything. If at any point that little voice inside your head cautions you against letting gluttony rule the day, put in your earplugs and count this as a #cancerwin.

- Brace yourself for the biggest piece of humble pie you’ve ever eaten. I didn’t know how deeply all of the people I know were capable of reaching into their kindness pockets. I also didn’t know just how much they care for and love me until cancer came calling. I have been humiliated by kindness (and I mean that in the old-fashioned Jonathan Edwards positive sense of the word) more often and by more people than I ever thought possible - so much so that I am completely incapable of ever repaying them. And within that impossibility lays more proof of both my inadequacy and the conquering power of love. There is no economy of love. It has been freely given to me with no expectation of a return, and that is what makes it beautiful. This is the radiance that shines brightly in all of this mess.

- And lastly, don’t forget the advice of my very favorite poem ever by Dylan Thomas, which says,

Do not go gentle into that good night,

Old age should burn and rave at close of day;

Rage, rage against the dying of the light.

PET Scan #1

We got the results from the PET scan today, and we have good news to share!

The scan showed that the cancer has not spread beyond the areas we already knew about. There's still the large (18 cm) tumor on Levi's left adrenal gland and some metastasis to his left lung on the bottom lobe, but it has not moved to any additional areas.

We'll take the results of this scan with us when we go back to MD Anderson to meet with the oncologist on Sept. 19. We have a long two-week wait, so we're trying to squeeze in some extra family fun in the meantime, especially since we don't know how Levi will feel soon during treatment. 

Enjoy some photos from our recent trips to the Westwood Aquatic Center and the Cleveland County Fair!