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.) 

Crocus in the Snow

A few years ago, when we were living in Berlin and enjoying a particularly beautiful spring day, Brad and I had a conversation in which we ranked the different places we’ve lived by season. It really wasn’t hard to agree: Utah won summer, because it’s hot but not torturous and Utah summer nights are cool, grass-scented, and magical; Michigan won fall, because hello, all the gorgeous trees; Arizona won winter because it didn’t feel like winter at all; and Berlin won spring because Germany has the kind of springs found in fairy tales, with the flowers and trees spontaneously blooming next to cute cottages in consistent sunshine.

If I had to say which season is my favorite, I would be hard-pressed to answer. Each season has its own change in the air and parcel of memories. I feel like I can smell each different season, and when I do, I am taken back to Fourth of July parades or conference Sundays at my Grandma’s house or stiff school shoes and the crack of new textbooks. I associate so many positives with the different seasons, and I love them all.

Except one.

I hate winter.

I hate the cold, I hate wearing a bulky coat, I hate the endless cloudy days, and I really, really hate the snow. It’s messy and wet, and within a few hours of falling, it’s dirty and black where the plows have piled it up. My memories of winter are of white-knuckled driving in a storm, mopping my mudroom floor AGAIN because it’s covered in melted snow grunge, and trudging up a sledding hill with a runny nose and icicle feet, wondering how I let myself get talked into this. Winter is the one season I can’t wait to end.

Which is why I love crocuses.

They probably have crocuses in Utah, but I never noticed them until we moved to Michigan. It was there, as I powered through a particularly oppressive February (you haven’t done winter until you’ve done a Michigan winter), that I caught sight of something peeking through the snow in my front yard.

Yep, a crocus. Popping its little purple-tipped head up in a promise of spring.

Crocuses are funny. They appear when it’s still impossibly cold, but they are so cheerful and spring-timey, you can’t help but associate them with warm weather. They remind you that the earth is still alive underneath and spring is just around the corner. Forget that mangy groundhog—crocuses are the real hope. They are that “possible” in the “impossible.” The flower in the snow.

I’m not in Michigan anymore, and frankly, Texas winters are much more to my wimpy liking. Not a lot of snow, and to my knowledge, no crocuses. But yesterday, in my appointment with my oncologist, I got my own little flower in the snow.

Y’all know that when I was diagnosed with metastatic melanoma last September, scans showed lesions in my brain and liver. I’ve been doing radiation to fight the brain lesions and immunotherapy to attack everywhere else. It hasn’t been a picnic. The immunotherapy infusions did a number on my liver and I’m still recovering from side effects even though we stopped the treatment after only two sessions. But guess what?

It’s working!

My latest scan, done in February, shows NO LESIONS on my liver. I was cautiously optimistic when I first heard the news, not sure if I could trust the results of a CT scan when it took an MRI to find the liver lesions the first time. But my oncologist has assured me up one side and down the other that this is good news—VERY good news. My liver is still inflamed enough that we couldn’t do anything yet anyway, but we are now talking about NOT continuing the immunotherapy treatments when it’s better. 

He said it’s common for patients who experience extreme side-effects to have at least as good a response to the treatment as those who are able to finish it—the fact that my body freaked out so much with the drugs means they worked super well. My little revved-up immune cells went nuts, and they’re still working. As far as he’s concerned, we’ve done enough to fight the liver lesions and can go into “watch mode”, which means scans every three months for the next couple of years to make sure it’s really gone. Of course, it’s possible something will show up, but for now, I feel like my life is coming back.

A crocus in the snow.

Unfortunately, this doesn’t mean winter is over. Immunotherapy doesn’t necessarily work on brain lesions, and as of last month, I was still getting those. I had two zapped in February, with two more tiny ones we’re keeping an eye on. I’ll have a brain MRI in about a month, and if we see any new lesions then, it could change the no-immunotherapy plan (even though the treatment won’t help my brain, the presence of new “moles” means melanoma is still alive and kicking in my body, so we’ll have to fight it some more).

But for now, I’m cheering the little bloom daring to brave my cold winter. I really, really hope I don’t have to do any more infusions, and I’m thrilled that no matter what, I won’t have to deal with any debilitating treatments until after Jessica’s wedding. The next month can be all about her and my family and my happy, springtime life.

Thank you, you cute little crocus, for pushing out of the ground and promising more color and warmth. You just might be my favorite flower.

Girl in a bubble

What is it about bubbles that's so awesome? One of my first memories is of holding a hot pink bottle of bubbles and trying to fish the little wand thing out so I could try to blow some bubbles. I was probably two or three years old, and I can still feel the way the plastic rim cut into my too-short fingers and how slippery the elusive wand was as I grappled for it. I don't think I succeeded. It's fuzzy, but I'm pretty sure I had to wait for my mom to retrieve the wand, and I'm sure I wasn't able to blow a decent bubble. At that age, I basically spit air at the soap in the little circle--in fact, when I think of it, I can taste the soap from the wand, so I must've held it too close to my lips--and of course it sputtered into nothingness.

But then my mom re-dipped it and blew, and...magic.

The big ones were the best, all glistening and wobbly as they floated by. My brother always wanted to pop them immediately, which made my little self SO MAD because I wanted to see how long they would last. I imagined them floating up, up, up into the sky, catching the sunshine and lasting forever. Rarely did they survive for more than a few feet--inevitably, the bubble would pop--and I'd turn to my mom to blow another. I was sure the next one would last.

Right now, I feel like I'm in a bubble. At my last doctor's appointment, the labs on my liver showed it was almost back to normal, and every day since then I have been less achy and much less tired so I think the inflammation is gone.  I've also been off the steroids for a week, so all the fun side-effects--raging hunger, inability to sleep, tremors in my hands, and sky-high blood sugars--are slowing down.

I feel like myself again. Like my old non-sick, non-cancery self.

It's magic.

I know I have lesions in my brain that will need to be addressed, but nothing is going to happen on that until April-ish. Treatment on my liver lesions continues to be on pause--I will meet with my oncologist in a couple of weeks to discuss what to do from here, since the immunotherapy I started in December is no longer an option. So for right now, I'm living in a beautiful, shimmering bubble in which nothing hurts, nothing makes me want to throw up, I am taking no drugs, and there are no test results I have to worry about.

I'm just floating along, enjoying the sunshine...

...and pretending it will never pop.