Straight Lines

It’s been a week. I haven’t done much besides lie on the couch/bed, and when I’m not doing that I’m sitting on the edge of the couch/bed trying to get up off the couch/bed. It seems like that’s what I do most of the day- sit on the side of the couch/bed, stare at my feet, and contemplate getting up for more pills/food/hydration.

Then there was the usual nausea and forcing myself to eat, bone pain (but not as intense as last time), dizziness, ringing of the ears, fatigue, dry mouth, and generally feeling like I just woke up on a stranger’s floor with only one sock and somebody else’s T-shirt after an all-night bender with the flu. I’m learning how to better manage all this with medication, though, and it’s all starting to feel routine. It’s sad but true: feeling absolutely awful is becoming normal. I feel awful right now.

In my sometimes losing but ongoing efforts to keep my head screwed on straight, though, I was reminded of a quote this week that gives me hope. C.S. Lewis said that, “a man does not call a line crooked unless he has some idea of a straight line”. He was talking about his nagging sense of how broken the world is proves the existence of something unbroken, namely God, and I think it works the same way for me. What I mean is, my world is really messed up right now. It’s filled with disease and lots of needles and not a little suffering, and my soul objects to these circumstances. It objects not just because of the unpleasant nature of the things, but because it knows it’s not supposed to be this way. It objects to the crooked line because it knows of the straight line. And this is comforting because my soul’s very objection to the crooked proves the existence of the straight. If it had never known the pleasure of a highter, straighter existence, this soul would not feel deprived by its current circumstances.

And if there’s one true thing in this world, it’s that things change. So I have to believe I’ll be back there sometime, to the place where my soul first got this idea that lines should be straight- the place where joy effortlessly flourishes and peace is assumed. Soon I’ll be back to hollering at drivers who don’t yield to my fire truck and climbing mountains only to come right back down (what a futile and pointlessly beautiful catharsis of energy!) and having conversations about anything other than cancer, moving through the days with the luxury of being absorbed in the moment’s inconsequential distractions.

God I long for that.

Hairless is the way to go.

We finally broke down and shaved Levi's head yesterday. You know it's time when you hit your head getting out of the car and all the hair falls off in just that spot. You should have seen the shock on my face when I looked up to see this while following Levi into the house afterwards:

We had been putting off the shaving because (1) no one wants to lose all their hair, and (2) Nora seemed a bit upset when we brought up the likelihood of Levi losing his hair several weeks ago. We were relieved to hear her say afterwards that it isn't as bad as she thought. I agree! What do you think?

BEFORE:

AFTER:

The Fog

I’ve done it again. I’ve sailed directly into The Fog. I don’t know if it’s that it’s been raining all day or all the napping or the chemo or all of it tied together, but I am just dazed. Time is passing strangely, in snippets. I wake to the bumps on I-44 at 29th st. on the way home from chemo at Mercy. Sleep. I wake briefly to hear Nora stomping up the stairs. Sleep. I wake to listen to the rain drip off my roof for a few minutes. Sleep. I wake and it’s no longer light outside, and yet here I am still, doing little more than breathing in my bed as time and the world slide by around me.

I was plunged into The Fog with the last round of chemo, too, but I wasn’t yet wise enough to yield to the fatigue and just go to sleep. After all, how can I possibly need 16 hours of sleep in a day? I’m just barely awake long enough to take all of my pills and drink all of my water. Forget doing anything productive, because you, my friend, are in The Fog. When people come to visit during my chemo appointments, I can’t remember who I’ve told what. I can hardly keep track of the day of the week! It’s like I’m aboard the HMS Surprise in the scene in Master and Commander where they sail into a thick fog bank to escape the Acheron pursuing them.

And I’m struck in a not-so-lucid sort of way how we all sail into The Fog from time to time in life. It’s probably not chemo-induced for most of us, but everybody knows what it’s like. You look up and suddenly it’s five years later and you wonder what you’ve been doing with your life, chasing somebody else’s dream as a default because you don’t know what else you should be doing with yourself. You wake up and realize there’s a lot you want out of life that you haven’t been pursuing because you, too, have been in The Fog.

Cancer doesn’t let you stay in that fog, and I really appreciate that about it. It’s jarring. It’s somebody standing in front of you, grabbing you by the shoulders, and shaking you good and hard. I shaved my head yesterday, and now I don’t like looking in mirrors. That’s jarring. I was jarred this morning when I participated in a room full of people slowly poisoning themselves at chemo. It felt like we were a bunch of adrenaline junkies pushing life right to the very edge just to feel alive, gritting our teeth and then yelling, “yeah, come on! Is that all you’ve got?!” We were skydivers waiting until the very last second to pull the ripcord or bungee jumpers who want that cord to stretch to within inches of the ground. I and the people in that room weren’t taking ourselves to the ragged edge by choice, but it still felt radical, like we were slurping up life in a rich way that only those who really believe they might lose it soon are capable of doing. We’ve left the fog and are gazing out at the wondrous world with eyes wide open; seeing, really seeing, for what may be the first time. Cancer gives us that, and I’m thankful for it.

Do not go gentle into that good night.
Rage, rage against the dying of the light.
– Dylan Thomas

Nov. Meal Dates

Here's an updated meal train with November dates! We are so grateful for all the meals and gift cards. It has been so nice to not have to worry about planning and making dinner in the midst of all we have going on. Thanks, everyone!

Click here for the meal train.

A note about chemo visits: I didn't add time slots this time, but you're welcome to reach out to me or Levi directly about visiting him during his chemo appointments. He is glad to have visitors!

This Hair Don't Care

Rubbing the steam off the bathroom mirror, I looked at my reflection and remembered I needed to comb my hair so that it’s at least making a half-hearted pretense of all running the same way. It’s stopped growing lately, though, so that I don’t really need the comb - a quick run through with my fingers oughta’ do it. It only took one, two, three passes before it looked acceptably tame. But then, as I reached for my toothbrush in the medicine cabinet, I noticed all the hairs stuck to my hand. There were maybe a dozen or so. I looked down at the sink, and it had another dozen hairs lying there staring up at me like dead pets, and the thought blitzed through my mind: my hair is falling out, and fast.

So that happened.

That was two days ago, and since then the speed with which my hair is departing my head like the proverbial rats from a sinking ship has only accelerated. It’s as though my hairs have no confidence whatsoever in my ability to sustain this body now that it’s awash with toxins. Thanks for the vote of confidence there, hair.

And I’m reminded of this, my own hair’s treacherous betrayal, in unexpected moments throughout the day, too. Some of it is on the scroll pad of my computer this very second. Drying my head after a shower leaves our white towels covered in so much of my dark hair that I have to shake it all off into the bathtub, which only makes me notice how much of it was already lying in there. My hair falls into my cereal milk. It fell into somebody else’s mashed potatoes today, too, but I just let him think it was his own when he pulled it out because hey, I’m no saint. I leave it on my pillow when I get out of bed in the morning and on the Molly dog when I was petting her this afternoon. That one actually felt like poetic justice. Finally she had to deal with some of my hair being on her instead of the other way around. #cancerwin

Aesthetically, I don’t mind losing my hair so much. At least it’s supposed to come back this time, unlike with the usual, boring old male pattern baldness sort of hair loss. I keep telling Emily that I’m basically just temporarily transforming into Jason Statham or Vin Diesel, but I can tell by her eye rolls that, although she believes the baldness is going to be a spot-on impersonation, I may be lacking somewhere else. I feel bad for her, really. She has to look at me when I’m bald, after all, whereas I just have to avoid mirrors and employ my rather fine collection of hats.

But it’s not just that. I feel for her for the same reason I also really don’t want me to lose my hair. It’s because being bald is the hallmark of being Cancer Boy. Until now, I could still jauntily trot around in public and nobody know about any of this crap. I could still pass for normal - I wasn’t yet branded. But now, now that my hair has gone down the drain with my cereal milk, I can’t escape the label. Pretty soon cancer will be the first thing anybody thinks of when they look at me, and poor Emily has to live with that visible label walking around beside her all the time. And for her, my baldness not only labels her as Cancer Boy’s Wife but will also serve as a constant reminder of this mess we’re in.

And I don’t really know what to conclude from all of this, except that it’s a funny, old world. Sometimes you lose all your hair for a while, and that’s okay. At least I’m gonna’ make a sexy bald man from the ears up. And for just a little while longer I have a new party trick where I lick my hand and run it through my hair to show off the impressive amount of hair that comes off in that single swipe. I mean, who else can do that, right?

Broken Things

“Do you think things will ever be the same again, or are we changed forever?”

I asked Emily on our drive home from Broken Bow a few days ago. I was curled up in the passenger seat with my head swirling while Emily stoically made the four-hour drive back home. My body was so angry with me. Everything hurt, and it had for days, and for all I knew it would for many more days. I was afraid. I was despairing, and I was beginning to suspect that there’s no going back, not after you’ve been broken like we had for the last few days.

I was broken in that moment, when I asked that question. The last week had been so rough. At that moment, I was nauseatingly dizzy and hot (my hypermetabolic tumor does this to me often) and had been for hours. For the past week I’d been so lethargic I’d hardly left the couch and the stagnant scenery was wrecking my mental world. I’d been through two rounds of puking, where I quickly learned that anyone who plans to throw up as often as me should not have a bushy handlebar mustache. I’d begun scooping hairs out of my cereal milk as they fell out, and that was when I had the appetite to eat anything. But mostly I just felt like I had the flu for the last week. I went to the E.R., too, for bone pain caused by one of the drugs. I didn’t know pain could ascend to an octave that high. I’ll spare you the details except to say that if this pain were a concert, it would be AC DC on stage. It rocked so. damn. hard.

So this week I’ve been broken by both pain and despair, and the experience has changed me, though I’m not sure how yet. To be completely, indefensibly undone; to be too far out to sea to row yourself back to shore, knowing that you are beyond your own ability or strength to restore things or yourself - that’s territory from which you don’t return unchanged. And there’s no guarantee of a silver lining here, because life, while it may not be intentionally cruel, is indifferent to your plight.

So now I am broken, like so many other things in this world. I am a pencil too stubby to write with or an old car sitting out under the cruel sun patiently waiting for oxidation, time, and gravity to tear it apart. And while this week has wrought physical decay on my body, it left a much more distinct mark on my soul. Lying on the couch watching the dog walkers stroll by at their appointed times each day, unable to help my family move through life, I felt discarded because of my brokenness, an island of purposelessness amidst the swirl of a family’s life. Purpose - that’s another thing cancer has taken.

I find myself fighting this brokenness, because I know that keeping a strong mental game is so important to fighting cancer, and being broken feels like a dangerous step away from that. Not only that, it makes me look weak, like I can’t handle this, and I’m pretty committed to the foolish pursuit of image management, even now. I try to wrap up all of my thoughts with a neat bow on top just like my writing, but the truth is sometimes I’m just shattered inside, despite all desire to the contrary.

But still, the little twinge of fear this causes that has been my constant passenger lately hasn't led to complete despair, because I've read from some pretty authoritative sources that I always have been broken, that it’s just part of my nature. Not even my perceived usefulness to my family or at my job ever really made me anything but broken. I am and always have been a lone sock whose counterpart got lost in the dryer, a lost fork behind the fridge. The only thing that really happened this week is the scales fell from my eyes and I’m seeing the reality of that brokenness more clearly than ever. Don't get me wrong- it hurts to see myself in such sharp relief. We’re so frail, so vulnerable, but our value doesn’t stem from our utility to this world. Just look at Jesus or any of the sages of old - they spent all their time around broken, poor people, and even seemed to prefer them as vessels to get things done. Those people had value to them. No, I think that our only value comes from our resemblance to our Creator, and he was and is, utterly broken - “a man of sorrows, and acquainted with grief.” I still feel broken and there may not be a bow to place on top of this, but at least I’m in good company.

At least, down here, it’s okay to be broken.

Shirts!

So many people have asked for shirts they've seen made for and/or worn in support of us, so here's your chance to order!

Your options are red Team Wilkins or gray NFD, as modeled by these lovely ladies:

The red shirt is a softer, thinner style while the gray is a thicker traditional t-shirt. Both come in sizes youth small to adult 2XL and both are $20 each. 

HOW TO ORDER:

Send payment along with your style(s), size(s) and quantity in the notes via paypal (emilywilkins@live.com), venmo (@Levi-Wilkins1), cash app ($LeviW1lkins), apple pay (405.923.0606) or with cash/check in person or by mail (contact me for address).

If you want your shirt(s) SHIPPED to you, add $5 per shirt to cover shipping costs. Otherwise we can arrange local drop off or pick up.

DEADLINE TO ORDER IS WEDNESDAY, OCT. 23 AT MIDNIGHT

Thanks for all of your support! We love you guys!

The Highlight Reel

I've been struggling to find a way to describe last week, and, despite any real sense of clarity,  I'm writing about it anyway.

We did some fun things recently, and it was tempting to post pictures on social media. It would have been easy to create a highlight reel of our experiences, but that would have been far from reality.

In actuality it was a difficult week. We were warned that week two of each chemo cycle would be the worst, and, without having experienced week three yet, I would say it was. Levi felt bad about 75% of the time, and the remaining 25% of the time he didn't have enough energy to do much more than walk across the house.

We tried to make the most of our time together, but note my captions that share the reality that pictures can't. This was the first week that it really hit us that our lives have changed for the foreseeable future.

We all made it to Touch-A-Truck! Levi mustered this happy face while feeling terrible, having a horrible headache, nausea & sky-high blood pressure. He spent most of the time sitting on a parking block and left early with his mom. Maybe going out after 4 days of chemo infusions, starting a daily chemo pill and getting a flu shot was a bad idea. 

We took our annual trip to Broken Bow over fall break with our friends. You'd never know it by these pictures, but Levi spent the night before we left on the trip in the ER with excruciating bone pain. It turns out the medicine he took to combat this side effect of another medicine wasn't enough. Thankfully we were able to get it under control and still go on our trip. Still, Levi was unable to leave the cabin while we were there. We're grateful for understanding friends and beautiful porch/hot tub weather. 

Today was Nora's school field trip to Orr Family Farm. Last year Levi and I were both able to go as chaperones. This year I left for the trip as Levi was taking a morning nap after a full night's sleep. 

Since Levi's diagnosis, our goal has been to have as much normalcy as possible. While none of this is normal, we're doing the best we can.

Breaking Cold

This morning broke cold, almost freezing. And then the sun rose too quickly, filtered through the pine needles and leaves that haven’t yet decided to show off the colors hidden within them. Then, at just the right time, when the sun had shone on them for just long enough, those leaves began to steam as the dew returned to the sky from whence it came and the sun pierced through that steam to make sure I couldn’t miss the delicate swirls as they departed. It was a very good thing.

I like cold mornings. They remind me of a lot of cold mornings on mountains, when you wake up warm surrounded by so much down but you know that your cold boots are waiting for your toes and you just lie there for a moment staring up at the taut red fabric of the tent above you, thankful. Those mornings are very good also. I read something about the cold the other day that describes it perfectly:

“You’ve lost your phone signal but found a deeper connection. You’ve come to the snowy hinterlands to pitch a tent, to see the sun rise, to remember what it feels like to be hungry, to let exertion instead of boredom exhaust you. You want to know what it feels like to be very, very cold and to have to make your own shelter. And at the end of the day, tucked into your mummy bag, before you fall headlong into sleep, you think: I am a part of this world, a line of the code, not a glitch… Meanwhile, nature looks on, indifferent, as you become aware…”

I’ve been pretty lucky, so I’ve seen lots of mornings like these. And it’s true that they do make you feel like a part of this world, a line of the code, not a glitch. Cancer is like that, too, and I think that’s one of its gifts. When you have it, it reminds you that you are a part of this world, for better or worse. You belong here, but that means you’re no more exempt from the suffering than the joy of this place. You have cancer because… well, there isn’t really a “why”. It happens to you just like things have always happened to everyone and everything, because you are a part of this place.

There’s a camaraderie here, and a love that develops for all the other people here with you. Cancer might not be their burden, but you can be sure they’re suffering from something. And knowing you are not a glitch, that you are exactly where you should be, allows you to show yourself some grace. It frees you to be kind to yourself because whatever is happening is not the result of some massive screw-up on your part, it’s just the way things go in this place.

 And what a place it is, where mornings break cold.

J. and the Waiting Place

This is day 4 of my chemo, and I’m starting to feel it (fear not, dear Reader, this isn't nearly as depressing as that sentence sounds). Day 1 I felt normal, Day 2 brought on some fatigue, but yesterday afternoon felt like I took a stun gun to the chest. It knocked me down and stole my lunch money. It had its way with me and didn’t even take me out to dinner first. This morning brought real improvement, though I expect things will end up this evening much like last night. So here we go! I’m climbing back into the ring a little bruised and with one of those bleeding cuts above an eye that fighters always get because I’m a stupid glutton for punishment.

In the meantime, the port they placed in my chest so they can more easily pump the hopefully life-giving and/or fatally toxic medications hurts like a son of a gun. It was placed less than a week ago in what was sold to me as a “minor procedure” that felt a lot more like “major surgery”, and has since been accessed four times by needles that are so long I don’t understand how they don’t poke all the way through the port and out my back. And the thing is that each successive stick hurts a little more, because the surgery site still isn’t healed up and it’s getting angrier and angrier. I bought some lidocaine cream last night and forgot to bring it today, so I knew accessing the port today was going to hurt before I even arrived.

And then I met the guy who would be accessing said port, and my fears were not alleviated. Let’s call him J. to protect this man’s identity. Underneath J’s shaven head, bushy blonde eyebrows, and intensely blue eyes you’ll find thick, beefy arms both covered in full tattoo sleeves with catchy and concern-inducing mottos like “pain is an illusion” (except to the patient), and “broken” (the people left in his wake?). To complement these little gems and fill out the rest of the sleeves, he’s covered in images of women weeping over tombstones labeled “darkness” and a large skeleton praying over a rosary. Yeah, this is the guy who will be stabbing the needle in my super-sensitive, not-yet-healed port today. My chances for a gentle stick that didn’t result in mind-altering pain were rapidly plummeting into the zero range.

And I’m proud to report that J. really lived up to the image he’s putting out there into the world. One jab at me was enough to curl my toes, but it wasn’t until he stepped back and then came at me with his full weight a second time that my feet left the floor and my eyes threatened to bug out of my head like Bugs Bunny’s. It seems he got all that latent animosity out of his system right there up front, though, because since then he’s been as soft-spoken as ever and, like all healthcare employees I’ve encountered, suitably relentless in his attempts to provide me with a warm blanket. Way to be, J.

So now that J. has completed his fiendish task, I have time in between super kind visitors to look around this place, the “oncology infusion” room, and notice that this place isn’t really what you’d expect. I’d expect it to be like the Waiting Place in Oh, the Places You’ll Go:

…for people just waiting.
Waiting for a train to go
Or a bus to come, or a plane to go
Or the mail to come, or the rain to go
Or the phone to ring, or the snow to snow
Or waiting around for a Yes or No
Or waiting for their hair to grow.
Everyone is just waiting.

But it’s not like that at all. It’s actually quite a productive place, in a useless, just-passing-the-time sort of way. From the vantage point of my seater-heater equipped recliner, everybody I can see is at least 40 years older than me, so the activities represented do represent those of a certain generation. Sue Grafton and Steven King are really getting exercised across the room, while some amorphous yellow-orange blob of a scarf? is really coming along next door. And don’t forget that white blood cell counts are plummeting and red blood counts are being decimated simultaneously all around us.

So maybe this place, like a lot of others, isn’t so useless after all. And it occurs to me that that’s part of what makes cancer suck, too: it makes you feel useless. It takes you out of the communal game of life to play your own, much lonelier game alone on the sidelines. You’re playing solitaire by yourself in the end zone of the high school football game. While everybody else is going to soccer practice and zipping by in red fire trucks (I literally stood on a street corner this morning and watched as my crew drove by on the engine I would be driving en route to a call if I didn’t have cancer), you’re still just standing there isolated like bubble boy thinking your own thoughts in your own little cancer-filled world. I don’t mean to suggest that everything about my life is defined by cancer, just that my life is different than all of those around me now that cancer has interjected itself into it. The overall effect is to leave a guy feeling, well, useless. Stuck in the Waiting Place for months without purpose or hair.

But… maybe this place isn’t so useless? I certainly hope it’s not as useless as it feels. Maybe this cancer place, just like the Oncology Infusion room, has more going on than meets the eye. It’s easy to look at the pale, drawn faces and the IV’s filled with poison and see only death at work here, but the truth is that a lot of life happens here, too. It’s just harder to see- you have to pick up a rock and look underneath to find it sometimes. So here’s to hoping things aren’t as they seem, that there’s radiance and beauty hidden just beneath the surface of all the junk of this place and this life. I think there is. I think it’s there, and I sure hope to see it.

Our New Normal

I tried to live a "normal" Tuesday today, but it felt anything but normal. I took Wyatt with me to the gym where I swam laps (if you know how much I hate to exercise this may come as a surprise, but trust me I only joined after Levi's diagnosis as preemptive stress management), we went to Art Adventures at the Fred Jones Jr. Museum and, because I haven't been to enough medical appointments lately, I took both kids to their annual eye exams.

This may sound like a normal Tuesday, but while I was going about a typical day, my husband was having his second day of chemo, which is nothing close to normal. His mom accompanied him today, and his dad and friends will be with him tomorrow and Thursday while I try to maintain a sense of normalcy for our kids and try to have some cancer/life balance.

It's difficult to feel needed in so many places and carry the burden to care for so many people at once. I'm incredibly grateful to not be doing this alone, and our community of friends and family have made it so that it isn't guilt I feel for not being with Levi but rather a sense of wishing I could (or sometimes should) be in multiple places at once.

As King Solomon talks about in Ecclesiastes there is a season for everything in life. Perhaps you could replace the word "season" with "cycle" in our family's life. At various times we have gotten used to Levi working a 4-day nights cycle, a shift work days cycle, most recently a 12-day/24 hrs. per day cycle, and now we're settling in to a new 21-day chemo cycle. Pray for us as we enter into this new season that we would have peace, balance and endurance for however long it lasts.