A Taco Toast

Monday, August 27, 2018: I woke up my boys for the first day of school, waved aside their grumblings, and left them to hopefully get out of bed and find some cereal as I fought construction and rush hour traffic on my way to Dallas for a 9:00 AM brain MRI. No first-day-of-school pictures for us. Mommy has to go check on her brain tumors.

Tuesday, August 28, 2018: The day of waiting. This is always the worst day. I tried to stay busy with seminary prep, errand running, and a couple of episodes of the Great British Baking Show, but my stomach was in knots. What if there are more lesions? What if the old ones are growing? What if I have to do more immunotherapy treatment? What would that mean? More sickness? Another abrupt halt to my life?

Wednesday, August 29, 2018: After 5:30 AM seminary, I buzzed home to find Luke coughing, feverish, and too sick to go to school. I showed him where the frozen corn dogs are for lunch, kissed his hot forehead, packed my purse full of snacks and a Diet Coke, then climbed in the car with Brad to once again fight the construction/rush hour traffic to Dallas. We arrived at Dr. S’s office two minutes before our 9:00 AM appointment. They took us right back.

Dr. S opened the exam room door, MRI report in hand, and mumbled some sort of greeting that sounded like “You doing good?”

“Yeah,” I said, eyeing the MRI report. The key to my life or lack thereof.

“So you’ve already heard?” Dr. S looked confused.

Huh? I didn’t say it, but I’m sure my face did. I stumbled over a few words, Dr. S stumbled over a few words, and finally he paused and repeated what he must’ve said when he first came in. “It looks good.”

“It does?”

“Yeah.” He smiled, back on normal footing now. “It looks great.”

It does? Great? Great, how? Great—new lesions small enough to treat again, or great—nothing new?

I was clearly not processing the information Dr. S wanted to give me, so he sat down, handed me the report and said, “There are no new spots. It looks great. Some of your old lesions are even gone.”

I stared down at the typed report, at words like “interval decrease in size of the hemorrhagic lesion within the right posterior cingulate gyrus” and “right medial occipital lobe and left superior parietal lobe are redemonstrated. No associated enhancement.” These words meant nothing to me, especially with my buzzing thoughts. What did this all mean? Was this actual good news?

Dr. S kept talking, giving me a play-by-play of each of my six previously treated spots, and in between all the big doctor words, I heard him say two of my treated lesions are gone, and the remaining four are significantly smaller.

I wasn't quite sure I could believe this. “Even the big one?” The first one they found last fall was the biggest lesion, and there was some question when they radiated it as to whether it would respond or require surgery. It always looks the biggest and scariest on the scan pictures—a hard, white invader in my otherwise fluffy, gray brain.

“Yep.” 

He gave me the exact measurements, but I wasn’t really listening. My heart was pounding, my two-fewer-lesioned brain doing cartwheels around the four shrinking tumors. It’s working. All this stuff we’ve been doing for the last year is working.

“We’ll schedule another MRI in three months to keep tabs.” Dr. S stood up and smiled almost apologetically. “Sorry you drove all this way for just a few minutes. Good news appointments are always short.”

I glanced at Brad, who was grinning like a wild man. “We’ll gladly drive out here for good news.”

Then Dr. S was gone, leaving Brad and me sitting alone in the empty room. There was nothing left to do but go, but as soon as Brad stood and turned expectantly to me, my eyes filled with tears. I watched his do the same, and his face crumbled with the same relief washing through me.

It’s working. This stupid cancer is edging away.

I somehow ended up in his arms, and we stood there hugging and crying for I don’t know how long. Luckily the doctor’s office wasn’t very busy, so nobody walked by the open door and saw us boobing like a couple of babies—or if they did, they were discreet about it. When we finally exited the room, it felt like the hallway lights had been turned on their very brightest setting. Nobody stopped us to schedule another radiation surgery, and the office suite door swished closed behind us so easily and cheerfully. See you in three months, it seemed to say. You’re good to go.

We also had an appointment with Dr. C, and he confirmed that with no new brain lesions, we could continue on “watch mode” with no plans for resuming treatment. This is by no means a get-out-of-jail-free card, as the cancer may have just slowed down, but it’s a step in the right direction. I will continue to get CT scans on my abdomen and MRIs on my brain every three months for at least another two years. It’s possible something new could show up—melanoma likes to hide and return like the nasty little gnat it is—but right now I am basking in the possibility it won’t. Right now I’m enjoying looking down the imaginary road of my life and not seeing the end, or even any road blocks. I feel as though my whole future has opened back up. I’m ready to think about something besides cancer.

To celebrate, we took the boys to Fuzzy’s Tacos for dinner—my choice, because, well, tacos are delicious. As we munched our crispy, drippy, spicy supper, I had the fleeting thought that we ought to make some sort of a toast to commemorate. I’m not a drinker, so I don’t know the toasting rules, but it would be okay to raise a taco in gratitude, wouldn’t it?

Let’s just say it is. 

My Taco Toast: 

Here’s to doctors who know what they’re doing.

Here’s to insurance that allows me to go to doctors who know what they’re doing.

Here’s to all the smart science people who figured out a better treatment in the thirteen years since my melanoma first appeared. If it had metastasized back then, we wouldn’t be having this conversation.

Here’s to my extended family and Brad’s extended family who have cried with me and prayed for me and cheered me on via text and phone calls and anything else they could think of.

Here’s to faraway friends who’ve felt so close and real and comforting. I’m pretty sure y’all are the reason God invented the internet.

Here’s to my ward members and Texas friends, whose casseroles, soups, chicken dinners, flowers, cookies, hugs, and tearful arm pats are full of voodoo magic. If it were possible to love cancer away, y’all could do it. Maybe you have.

Here’s to my kids, who have had to put on their grown-up pants and look out for Mom. It both breaks and warms my heart to see the worry in their eyes and be on the receiving end of their care when it should be the other way around.

Here’s to Brad. My sweet Mann. My love for you is too big for words, and I am so not ready to say goodbye. I don’t think I ever will be.

And here’s to my Savior. My testimony of Him is as necessary as air, a consistent life raft in a cold and stormy ocean. No matter what happens, I know He will save me, and I trust Him to decide what that means.

Here’s to no new lesions.

I’ll absolutely crunch to that.

Safe!

There’s no other way around it. I just have to say it. I feel like I’m in an addiction support group, and it’s my turn to speak in the circle. Deep breath…here we go...

My name is Jill, and I love baseball.

Not just any baseball, mind you. I don’t care about the Texas Rangers, and when I lived in Michigan, I didn’t care about the Detroit Tigers. In fact, I can’t see the appeal of a live professional game—dealing with traffic and parking and crowds, just so I can sit in a cramped stadium seat and sweat in the hot sun to watch players too far away to see. And baseball on TV? Meh. Kinda boring.

No, the baseball I’m talking about, the baseball I love, takes place on city fields with family-run concession stands and sometimes sketchy restrooms (the “sometimes” doesn’t refer to “sketchy”—they’re always sketchy—but to the existence of the restrooms themselves. Flushing toilets are not a given in my baseball world). The baseball I love is plain ole rec league youth baseball, specifically the 12U division my son Luke plays in.

  

 This summer's All-Star team and the best coaches in Texas.

Although, to be accurate, Luke isn't Luke at baseball. A year ago, when Luke moved up to 12U and met his team, one of his teammates introduced himself as “Laken, like bacon” (people tended to think his name was Lincoln). All Luke heard was Bacon, and he decided then and there that if Laken could be Bacon, he could be a breakfast food, too. So he told his team to call him Waffles, and Waffles he has been ever since. Like, all the time. Some of his coaches don’t even know his name is Luke. At one game, the head coach made the mistake of listing him as Luke on the batting line-up, and the assistant coach who was managing the dugout had to ask who that was. I'm telling you, he's Waffles. He steps up to bat, and everyone yells “Getcha a good one, Waffles” or “Head on the ball, Waffles.” When he makes a good play, it’s “Good hustle, Waffles!”, and if he misses a grounder, his coach roars “WAFFles! You gotta get DIRTY on those!”

Baseball is a community of nicknames, and if my son is Waffles, it stands to reason I am Wafflemaker. Because I’m obsessed with baseball, I love even the practices and try to attend as many as possible. I set up camp behind the backstop with my canvas chair, water jug, Diet Coke, and Joey (who also loves baseball—he gets all panty and excited when Luke grabs his bag for practice) and soak in all the baseball goodness as the sun sets over the field. I’m often the only mom there, so when a foul ball is hit out of the field, the players yell “Wafflemaker!” and I chase down the ball and attempt to throw it in without embarrassing myself (mostly unsuccessfully). Then I sit back down in my chair and listen/watch/process all the stuff the coaches are teaching the boys.

I am not a sporty gal, so my experience with baseball/softball was limited to watching my dad and brothers play in for-fun leagues through the city or church. It turns out there’s a lot more to the game than just swinging a bat and hoping for the best. Did you know you can aim where you hit the ball? I didn’t. And when fielding, sometimes players have to move from their positions—in fact, there are lots of times they have to move. It’s not cool to just stand there and hopefully catch the ball when it comes to you. Good fielders have to cover and backup and bounce and crash. And probably lots of other moves I didn’t pick up on.

One of the key things the coaches focused on this season was stealing bases. I learned that stealing is a huge strategy for getting players around the diamond, especially in 12U when pitching can be iffy and not every ball gets caught. The coaches spent a lot of time teaching the boys the finer points of stealing bases—things like leading off at just the right distance so you can make it back to the base if the pitcher tries to pick you off. (The optimal lead-off is the exact distance it will take you to throw yourself facedown back at the base, arms extended over your head and fingertips grazing the bag. That way you've gone as far as you can go while it's still possible to get back to the base. See how much I learned?) And sliding...oh the sliding. I don't think anyone in the whole history of the world has done anything with more gusto than a twelve year old boy sliding to a base.

It always means getting dirty, and sometimes, it even means getting hurt. Luckily it didn’t happen very often, but occasionally an ankle would get turned or a hand stepped on or an arm thwacked with the ball. Sometimes there were tears, though at this age, not so many. After determining no permanent damage had been done, the coaches would brush the player off, pat him on the back, and leave him on his base. Then they’d make him do it again.

Sounds brutal, right? As a certified girly girl, I can’t imagine diving face down in the dirt or launching myself on my hip to slide several feet to safety. But these boys did it over and over again, and it paid off. Come game time, our team could steal bases with the best of ‘em. It never failed to send my heart a-racing when one of our players crept into his lead, then either stole to the next base or dived back to the one he just left. Dust would fly, covering the player in dirt and making it impossible to see if the defender had made the tag. We parents would sit forward in our camp chairs, waiting for the official to make the call--either a clenched fist for “out” or arms sweeping outward for “safe.” 

If it was an out, we’d all groan in disappointment, then clap as the slumped-shouldered player trotted back to the dugout. But most of the time our boys were safe, thanks to base coaches who knew what they were doing and the boys’ willingness to act without question. Declared safe, our players would stand up like they’d been taught, brush at the dirt that would never completely wash out of their pants, then glance at the fans and grin from ear to ear. Safe is a pretty great feeling.

Safe. That’s how I feel now.

One of the hardest things I’ve had to deal with since my diagnosis is the loss of control over my life. Every two to three months, I get scans to see the status of the cancer, and the results of those scans determine what treatment, if any, I’ll have to do. It’s the treatment, not the cancer, that makes me sick, so I dread getting the scans as they open up the possibility that I will have to do another round of immunotherapy. This makes planning ahead really hard. I don’t know what I’ll be able to do beyond each three month mark, so things like vacations or show tickets or anything that has to be reserved in advance feels like a crapshoot. No matter how amazing my plans, one new spot on a scan will cancel them. In terms of priority, cancer treatment will always win.

This makes me almost not want to plan anything because I don’t know if it will be possible. But at the same time, I don’t want to let this stupid disease rob me of my life while I’m still living it. So I take a leap of faith and buy those tickets or let myself get excited about spending time at Bear Lake with my extended family. I feel like a little leaguer leading off to steal the next base. I just have to go for it.

But then it comes time for a scan, and I’m the player lying in the dirt, waiting for the official’s call. I wrote in my last post that I had radiation surgery (SRS) on two new brain lesions back in May. These new lesions were not good news--even though we zapped them with radiation, the fact that they popped up meant I still have live melanoma cells swimming around in my system, even after the immunotherapy. So I went to my oncologist appointment earlier this month with a lot of trepidation. I was very afraid he was going to tell me to buckle up for more chemo treatment. Summer plans kaput.

First we went over my blood work. Ever since January, when we had to stop the immunotherapy treatments because my liver flared up, I've been getting weekly blood draws to check the status of my liver. It's still not normal, but for the last month, it's held strong at "almost-normal" without the help of steroids. That's good.

Next we looked at the results from my latest abdominal CT, which I’d had done the week before. Brad and I exchanged a hopeful smile when we learned the liver lesions are still gone. This is the same news we got back in April, and it was a relief to know nothing had changed.

But there was still the matter of the brain lesions.

Dr. C went over the information on his computer screen. “Two more spots radiated,” he said, screwing up his mouth in thought. “And when is your next brain MRI?”

“End of August.” I see a different doctor for my brain lesions, and Dr. S’s office hadn’t scheduled an exact date for it yet.

Dr. C nodded, contemplating. “Hmmm.” More contemplation. “Let’s do this. I don’t want to do any immunotherapy unless it’s absolutely necessary, because I don’t know what it’ll do to your liver again. Come see me after your next MRI. There’s a chance there will be nothing new, and if that’s the case, we can continue as we are, just watching.”

In my mind, I saw the baseball official sweep his arms to the sides. Safe.

For now.

“However,” Dr. C said as I mentally dusted myself off and eyed the next base, “if there are new spots on the next MRI, we’re going to have to consider some sort of treatment. We can’t do the same combination of drugs we did before, but we can talk about some other options. If this pattern of new lesions continues, we’ll have to do something.”

He then went on to talk about a possible BRAF mutation, and how I might be positive even though my original biopsy said negative because the tissue sample was so small. If I have the BRAF mutation, there are more treatment options available, but unfortunately (fortunately?) I don’t have melanoma cells available to biopsy—they can’t really collect tissue from my brain. And as long as my brain lesions aren’t under control, I couldn’t do BRAF treatments anyway. So…I don’t know what the plan would be. My plan is to pray for no new lesions. That would be the equivalent of a big, fat homerun.

But for now, for the next six weeks, I’m safe. My foot is firmly on the bag, and until I have to lead off and sprint for the next base, I’m just going to stand here, grinning from ear to ear like the successful little stealer I am. I’ve managed to advance a few bases, and I bear the marks of my time in the dirt: my skin and hair are splotched white from my immune system attacking the melanin, and I have a couple of bald spots from radiation. But no player worth his—or her—salt comes away from a game without getting dirty. I don’t mind a few stains.

Because I’m safe. Safe to laze on a beach, stay up way too late playing cards, and boat with my favorite people in the world. Safe to go to the show I’ve been looking forward to and walk hand-in-hand with my husband, breathing in the crisp combined scents of trees and water. Safe to feel nothing worse than the kind of tired that comes from a day playing at the lake. Safe to do all the things that make me the happiest.

Safe.

It’s a pretty great feeling.

Foraging for Paper Clips

The other day, I was driving in the car with Brad when his brother Zach called. The Bluetooth system in the car automatically connected to the call, so I was able to hear both sides of their conversation as I rode along in the passenger seat. I’m not sure Zach even knew I was listening in as he told Brad about an experience he had a few nights ago.

Zach started off by filling Brad in on the status of the dump trucks they own together. This is a fairly new thing—about six months ago, Brad, Zach, and a couple of other guys formed a partnership when they learned of the high demand for trucks to haul away construction debris in the Salt Lake City, UT area. It has been a bit of a whirlwind. Almost immediately, they secured a contract for a road construction job, and they now have four trucks, four dump trailers, and enough drivers to keep them running day and night.

But it’s also been a huge learning curve in a short amount of time. There’s a lot to running a trucking company, and they’re all learning it as they go. That’s what cracked me up about Zach’s side of the conversation. It went something like this:

Brad: "How’re the trucks running?"

Zach: "Good, dude. The trucks are running good. But the stupid trailers…" (starts chuckling)

Brad: "What?"

Zach: "A couple of them have been sticking, you know, in the up position. They tip up to dump and don’t come down." (more laughing) "Yeah, I get this call from [driver’s name I can’t remember] in the middle of the night the other night, and he’s all 'I can’t drive. I’ve tried everything and the thing won’t go down.' So of course, I popped out of bed. 'I’ll be right there.'”

Brad: (Knuckles go white on the steering wheel. He hates that he’s so far away and can’t help with stuff like this.)

Zach: (totally laughing) "So there I am, driving out to this construction site in the dark, and I’m thinking, What am I doing? I don’t know anything about trucks. What am I going to do when I get out there? Just walk around the truck and say, Yep. It’s stuck? I don’t know how to fix this. I mean, I’ve heard one of the mechanics say something about a sensor you can bypass with a paper clip, so I’m searching my car for some stray paper clip. But I don’t know where this sensor is or how to bypass it."

Brad: (gives me an eeeesh glance from the driver’s seat)

Zach: “Luckily, when I got there, [one of the other partners] was already there, and he knew what to do. We got it working. It’s all good. We should be able to bill…"

He started talking hours and invoices, and I tuned out for the rest of the conversation. All I could think about was Zach getting the call in the middle of the night and hopping into action, whether he had a solution or not. 

In the nine months since I shared my cancer diagnosis, I’ve had lots of people say things like “You’re so strong” or “brave” or “inspiring.” I hear these comments and of course appreciate them, but underneath it all, I cringe a little, feeling like a fraud. I’m not brave or strong or inspiring. Honestly, I’m more scared and weak than anything. I write down my thoughts because it helps me to sort through my feelings, to make sense of this illness and what it’s doing to me and my family. But most of the time I feel like Zach, sifting through cup holder junk in the middle of the night, hoping to paperclip a dump truck back together. 

Like Zach, all I can do is get out of bed at the call. A friend of mine made a comment once that really resonated with me. She referenced a time in her life when everything fell apart, and how she used to hate it when people praised her for pushing through it. She said she would just stare at them and think, “What choice do I have?” 

That’s exactly what I think. What choice do I have?

It doesn't matter if the water is cold or warm if you're
going to have to wade through it anyway.
- Teilhard de Chardin

I think it’s fair to say we all have things we have to wade through. Some things are harder than others—for some the water seems especially cold—but the fact remains that sometimes we just have to plunge our feet in and keep moving. All around me, I see people up to their knees in icy waters. Things like caring for challenging children, starting over in a new place, dealing with loneliness or isolation, or being betrayed by someone they trusted. Cancer is certainly not the only hard thing out there—or even the hardest thing. There are lots of difficult things that happen to good people, and those people just deal. Maybe that’s one of the reasons I feel so compelled to share my thoughts—so others in the water will know they’re not alone.

Or maybe I’m just selfish and need an outlet for my emotions. That’s possible, too. Probable, actually. I certainly don’t feel very noble, and the last thing I want to do is set myself up as some sort of do-gooder when that’s not really my motivation. But I will say these last few months have made me more aware of the struggles happening around me. Life isn’t easy for anyone, and if I’ve ever said something that speaks truth to someone or offers a sliver of hope, I’m glad of it. 

Because honestly, out here in the frigid water, it really does help to have a few friends who are freezing, too. Yes, sometimes we cry and wish our feet weren’t so cold, and we may even pause for a while to feel sorry for ourselves. But then we look at each other and take the next step. 

And hope this dang paper clip will work.