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.

Melanoma: the Musical

In 2003, back when Brad and I were cute and in love and felt the need to celebrate our anniversary, I bought us tickets to see a Broadway show playing in Detroit (side note: fifteen years later, we are less cute, more in love, and less inclined to make a big deal about our anniversary when every day together is just so good). But I digress…

I got tickets to The Producers, which is a show about two men who purposely put on the worst musical they can find in order to scam their investors when it flops. So they produce something called Springtime for Hitler, only—to their chagrin—it is a huge hit and they can’t get it to close. It’s a clever show, and Brad and I enjoyed it, but then we always enjoy a good musical. One of the best trips we ever took was the three days in London where we saw five West End shows. That’s my kind of vacation.

But I digress again…

Mel Brooks (who wrote The Producers) thought Springtime for Hitler was the worst title imaginable for a Broadway show, and I’ll admit that’s pretty bad. But I may have one even worse.

Melanoma: The Musical.

In my family, we have something my siblings call “the chip.” Some of us are hard-wired to be able to come up with a song for any occasion. ANY occasion. It started with my mother, who used to light up our kitchen with goodies like “Old Man River”, “Honky Tonk Woman,” and my personal favorite “Short’Nin’ Bread” (I still can’t reach for a can of Crisco without singing, “Mama’s little baby loves short’nin, short’nin…”). I have a couple of siblings whose “chips” are amazingly well-honed, and let me tell you, it makes for some rip-roaring conversations around my mother’s kitchen table. My “chip” is amateur-level compared to theirs, but that doesn’t stop me from assigning songs to random events. Somehow, I apparently believe life is a musical.

So, what song would I sing today?

This morning, I went in for my third SRS (Stereotactic Radiosurgery) to attack the two newest melanoma lesions on my brain. For those of you who are counting, this makes six lesions currently hanging onto my gray matter, four of which have already been zapped and are shrinking nicely. But the appearance of two new ones—especially after I underwent immunotherapy to kill the cancer cells floating around looking for a place to land—is discouraging news. We thought we were playing offense, but this means we’re still playing defense. And the other team is scoring.

So, back to my question. In Melanoma: the Musical, what should I sing today?

My first inclination is Toby Keith’s “I Wanna Talk About Me,” because I feel like all I ever talk/blog about anymore is this cancer, and, well, blah, blah, blah. I’ve never been one to blab on and on about myself—at least I don’t think I am—and I’m starting to feel like the girl you avoid at parties because all she can talk about is herself. 

So my next thought is “I Don’t Wanna Talk About It” by Rod Stewart, because I don’t want to be that girl. I also wish it wasn’t happening, and I haven’t been talking about it, at least not out loud. I’m still holding onto the last vestiges of my maybe-I-don’t-have-cancer-anymore bubble, so I smile when people ask how I’m doing and tell them I’m fine. I don’t want to say I’m having another radiation surgery today to kill the lesions that keep coming. Putting those words into the air will threaten the bubble already trembling to burst.

But then I remember I promised myself I’d be honest, and hiding behind a smile isn’t honest. So I think of “Beneath Your Beautiful” by Labrinth because you, my friends, are sincere in your concern and deserve the truth. The best kind of friendship allows the ugly to show, too.

So I’m writing the ugly because it’s easier for me than speaking it aloud. In my darker moments, when I’m angry at this cancer for popping up in my brain again, I want to sing “Can’t Get You Out Of My Head” by Kylie Minogue. The slightly humorous bend makes me feel better for a minute. And in my optimistic moments, when I feel like a fighter and tell myself these are the LAST lesions we’ll have to zap, I sing “Another One Bites the Dust” by Queen.  That makes me feel better for longer, because Freddie Mercury. Freddie Mercury’s mustachioed passion always makes me feel better.

Of course, since this is radiation surgery and it happens in a highly protected, high tech room with radiation beams aimed at my head, “Radioactive” by Imagine Dragons is a natural choice for today. I did feel a little glowy when I was done, although not for any real, science-supported reason. It’s just hard to lie there for 30-40 minutes without imagining my skin glowing red and my brain exploding in the nuclear cross hairs.

But now that it’s all done, I think the winning song for today is “Pretty Face” by Sóley. Not because I think my face is pretty—I’m far too old for pretty any more—but because of the disconnect the singer feels to her face. And the overall sense of being trapped.

 

I have to wear this mask when they do the SRS so they can screw my head to the platform and it won’t move during the treatment. It was custom made for me back in October, the plastic mesh molded to my face while hot and pushed into every nook and cranny around my nose, eyes, mouth, and cheeks so it has a very snug fit. I have used it for every radiation surgery since then. It very literally traps me down.

It also looks just like me, which is really weird. I’ve never seen my face in 3D before, yet whenever I pull out my mask for another surgery, there I am, eyes closed and unsmiling like a death mask. It’s kind of a reminder I have lost control of my body, and that body is creating death cells I never gave it permission to create. I recognize that face, yet I don’t. It’s the person everyone else sees, yet not the one I know. It’s me, and it’s not. But it’s hauntingly familiar. 

So yeah, the plastic face creeps me out.

But I also like "Pretty Face" for today because of the singer’s need to escape. She wants to run, to leave a bad situation and chase her dreams, but it feels hard and insurmountable. She lists all the things her heart wants, but there’s an underlying sense of doubt, and it's almost as if she's saying good-bye to everything she once wanted. I feel that, too. I want to want things, but I’m not sure I dare. There’s a piece of me that says, “Do everything, accomplish those goals, finish that book—you don’t know what your deadline is going to be!” But there’s another part of me that hurts to dream. Because I don’t know what my deadline is going to be.

It’s a messy song, with messy feelings. Maybe that’s why I like it. I had a third go at SRS today because I hope this will make my lesions go away, but I’m also discouraged because this is my third go at SRS and the lesions keep coming. After each treatment, the tech asks me if I want to keep the mask or have them throw it away—I guess it’s assumed I won’t have to do it again. Hope. But I opt to keep the mask. So far, there has always been a next time.

Of course, every good storyteller knows the situation has to keep getting worse and worse before it can get better. A happy ending means nothing if the story has been happy throughout. So maybe today's radiation treatment is simply the beginning of the third act of Melanoma: the Musical. Maybe this is the climax, the final sword fight, the scene in which all seems lost. Maybe in three months, when I have my next brain scan, it will come up empty and there will be no more lesions to battle. Maybe the heroine will finally conquer all.

Amazing! Laughter through tears! Tony Award worthy! If I were writing Melanoma: the Musical, that’s how I'd end it. “Pretty Face” would be the ballad that wrapped everyone in the helpless uncertainty surrounding cancer, reinforcing how the hoped-for conclusion cannot be guaranteed. The audience would cry a little, wondering what else can be done and coming up empty. Then I’d bring God into the mix for act three and remind everyone He is in charge. One little miracle, and poof! Happily ever after.

Yeah…that’s how I’d write it. And it would be awesome. My new favorite musical.

But unfortunately, I’m not the author.

I guess I just have to trust the One who is.

Pretending

Over the last couple of months, I've used lots of images and metaphors when talking about this cancer--bubbles, cute, childish games, and cheery flowers poking through the snow.

Today, I feel like this:

 And this:

And this:

No more lighthearted metaphors, just the truth: I found out this week that I have two new lesions in my brain. New lesions--not old ones from before that were too little to worry about--NEW ones. Which means the cancer is alive and kicking. Still.

We'd hoped, after my latest CT scan, which showed no evidence of metastatic disease anywhere in my chest, abdomen, and pelvis, that we'd nixed this stupid melanoma. "Yay!" we thought, "the immunotherapy worked! As miserable as that was, it did its job and now we can start thinking past this cancer diagnosis. We can get back to Real Life!"

There was a lot of smiling at the oncologist's office. Dr. C said things like "As long as there's nothing new in your brain, I don't see any reason to resume treatment and kick that hornet's nest" and "I expect we'll have very good news with your brain MRI next week--maybe even start to use the 'remission' word!"

Brad gave me a fist bump, I kissed him on the lips, and we practically skipped out of the cancer center into the spring sunshine. On the drive home, I texted our parents to tell them the good news, but something held me back from shouting it out to the rest of the world. "Wait until after the MRI results," my inner voice said. "Then you can celebrate without having to take it all back. You know, just in case."

Although really, I didn't think I had anything to worry about. On Monday, I happily listened to an audio book as I drove myself into Dallas for the brain MRI and arrived in plenty of time for my appointment. I greeted the imaging tech with a big smile, and we chatted back and forth as he got me settled. I even made some lame joke about him taking his time so I could have a nap. Ha, ha, ha, we chuckled. Isn't this fun? No big deal. I've done this before, and there's nothing to worry about.

Then he pulled out his clipboard to fill in some information missing from my chart. "Why are we looking at your brain today?" he asked. I gave him my stock answer about the melanoma lesions. "And have they staged it?" he responded.

"Staged it?" I asked. In my mind, I imagined someone setting up my brain for an attractive photo, but that didn't make sense, so I just looked at him dumbly.

"Yes, staged it. Categorized it." He glanced up from the paper. "Since the melanoma has spread, I assume it's stage four?"

"Oh." I said, my smile fading. "Yeah. I guess so."

He conveyor-belted me backwards into the machine, and for the next thirty minutes or so, I repeated those words as the magnets knocked around me. Stage four, stage four, stage four.  This isn't something my doctor has ever vocalized, though the poster hanging on the back of his office door clearly states metastatic melanoma is considered stage four. I think the oncologists at the cancer center have all made a pact to keep things positive and only talk about treatments and cures. None of them has ever looked at my chart and said, "Eeesh. Stage four. Yeah, that's the worst." Stage four is only mentioned in the real world, where we grimace as we talk about somebody's aunt or Sister So-and-so who has Cancer Real Bad. It isn't something I've ever applied to myself. But as I lay there buckled into that MRI machine, all I could think of was that as far as I know, there isn't a stage five.

By the time I finished, my good mood had disintegrated. I know better than to ask the technicians if they saw anything because they always say the radiologist has to read it. But I've learned I can get a pretty good idea by the way they act after they've taken the pictures. They almost always joke around and chat before the scans, and if that continues afterward, I can assume they didn't see anything scary. That's what happened at my last CT scan--it was a party before, and a party after. But when I've had scans that detect lesions, the techs are noticeably different. After the MRI I got in September that showed the original--and biggest--tumors, the poor MRI tech was so shaken as she led me out of the test area that I almost asked her if she was okay. That's when it dawned on me I was probably about to get bad news.

This guy barely met my eye when he returned from his little control hub and helped me off the MRI bed. He pointed at my key where I'd left it by the door and hustled me back to the changing rooms--no banter, no lighthearted jokes. Honestly, I felt a little drop-kicked out of the imaging center, as if he couldn't get rid of me and my cancer-riddled brain fast enough. I drove home, trying to listen to my audio book, but ended up turning it off because I couldn't keep my mind on the story. I was too worried about what was on the scans.

There is a rare form of torture in the cancer world: the Wait. You get a scan that has the power to change your life, then have to wait a couple of days for the results. A biopsy--which stirs up all kinds of fear in your heart--can take several days to process. Blood tests, CT scans, MRI's...waiting, waiting, waiting. And there's nothing you can do. It just takes time. All you can do is reinsert yourself back into your life and do your best to stay busy and not think about it. And hope you don't wake up in the middle of the night. Worry always wins at two a.m.

So, yeah. That's what I did. And yesterday, I got the news. The cancer is still there. The four spots we've already zapped are smaller--so that's good, since it means I'm responding well to the radiation--but I have two completely new lesions since February. The immunotherapy did not squash the cancer bug and my brain is still under attack.

I'll have another radiation surgery (SRS) as soon as we get approval from the insurance company--probably in about two weeks. From there, I'm not sure. I don't know if this means I'll need to resume the immunotherapy treatments, and if so, I don't know what that means for my summer. Or beyond. It's possible Dr. C won't recommend more treatment right now--he's pretty hesitant to subject my liver to that again--but he did say we'd have to reconsider our "watch mode" plan if new lesions showed up in my brain.

Sometimes it's hard to feel blessed, but I'm doing my best to be thankful for the last two months. I felt completely back-to-normal for Jess and McKay's wedding, and that day will forever hold a thousand good memories, especially when I think of all the people who came to support us. I'm so glad I was able to enjoy that time untainted by this stupid cancer. I've been able to cheer Adam on at his regional golf tournament and yell lots of encouragement to Waffles (Luke) on the baseball field. I've also loved returning to my friends in early morning seminary and feeling the hope that radiates from young testimonies taking shape. There has been a lot of hope in my life this spring. When I look back, it feels like I was dancing in sunshine.

I know the sun will return--it always does--but today the clouds are dark. And I can't seem to hear the music.

Tomorrow, I will remind myself that nothing has changed; I simply have the melanoma I have had for a year. But today I'm going to be sad. It's just that I started to remember how it felt not to worry about cancer. I allowed myself to plan a summer full of family fun and get excited about teaching another year of seminary. I bought tickets for stuff, marked dates on the calendar, and imagined myself greeting a bunch of soggy-eyed teenagers every morning at 5:30 a.m. I remembered how it felt to have control of my life and lustily anticipate all the good things coming.

I got used to pretending I don't have cancer, and now I can't pretend anymore.

I really, really miss the pretending.




(To those of you who are still reading, please don't panic. I really am okay. I'm just taking a few hours to feel what I feel, and putting my discouragement "on paper" has released it somewhat from my heart. I'm not looking for fuss or anyone to make it all better; I just vowed I would make this journal an honest account, and I'm holding myself to that. Simply knowing y'all care to read this is enough.)