Puzzled.
My friend Liberty sent me a puzzle to work on during my time here getting therapy in Houston. It’s a pumpkin puzzle. Heirloom pumpkins in beautiful gradations of orange, black, green, pink, and multi-tone speckles splash across the frame.
It has been slow-going. Every piece must be examined carefully for a possible clue: a slight texture or partial shadow that may indicate placement. I organized the pieces into color piles, hoping it would be easier if sorted: peachy-yellow, black and gray, olive and forest green, orange and pink. But I quickly realized that when I think I’m searching for a piece to complete a dark orange pumpkin, for example, what fits is dark gray—almost black. The colors shift, and the shadows are so much darker than you’d think. It seems I am always mistaken, sifting through the mess, looking for the wrong thing.
It’s the hardest damn puzzle I’ve ever done.
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Some months back, I got a test result I didn’t like. In today’s cancer world, therapies can be targeted to the specific genetic mutations in your personal cancer. This is called genome therapy, and it seems to be the future of cancer treatment. I wrote a bit about this in a recent blog.
The results indicated a mutation called PPM1D. There are no current targeted therapies for it, none are being researched, and the very presence of this mutation is a poor indicator for long-term survival. In these studies, long-term survival is 10 years.
This was dark news. I cried off and on all day. But then the light quickly shined again: upon further review, another doctor told me that the test results were invalid. It seemed that not enough of my tumor tissue was present for testing. The test would need to be done again.
Then suddenly, cancer started coming back, growing visibly on my skin. It was a frantic, whirlwind trip to MD Anderson in Houston for critical and intense surgery at their Inflammatory Breast Clinic. And here I still sit as I finish up radiation.
One week after surgery, I heard the sweetest words a cancer patient can hear: We got clear margins, which is cancer-speak for We got it all. I am officially NED (No Evidence of Disease) which is the modern version of remission. I am cancer-free as far as everyone can see.
The light shines. The gloom is lifted.
The day I got that news, I also cried off and on, but for different reasons.
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I hadn’t even thought about that rogue mutation again. It wasn’t until a recent follow-up appointment with my Oncologist here at MD Anderson that it reared its ugly head again.
As I sat in the small exam room, my Oncologist explained that she was going to put me on secondary drugs for a try. I asked my doctor why she thought that the medication I was taking all summer had suddenly stopped working and my cancer returned practically overnight. How could something work so well for five months and then just stop? What changed?
I think I have an answer, she said. She explained that she had sent out my most recent tumor tissue for genome testing, and she had the results that she wanted to go over with me.
She explained that Yes, I do have the PPM1D mutation. But I also have another one called ATR. She explained that these are both in the same family as the BRCA gene mutation, the well-known “breast cancer gene.”
Are there any trials or drugs that target these mutations? I asked.
No.
What do these mean? I asked. What does the presence of these mutations mean for me?
She paused. Her eyes found mine:
Both PPM1D and ATR are therapy-resistant. It means these mutations create resistance to drugs, so your cancer does not respond well to treatment.
The room was silent as I took it in.
I see. I have not one, but two drug-resistant mutations. This cancer keeps coming back because so far, it is smarter and stronger than the therapy I've been given.
I told a friend recently that I feel like I’ve been fighting a battle with heavy weapons for the last year and a half: chemo, surgery, drugs, a second surgery, radiation, more drugs. Now suddenly, I’m at the end. I’m standing in the middle of an open field, with all of my weapons behind me. There is nothing left to fight with. I’m bare, vulnerable, looking over my shoulders for an unknown enemy.
I’m cancer-free, but instead of celebrating, all I can think is: When is it coming back again? How long this time?
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The thing about a puzzle is that while you’re working on it, you really can’t see how the pieces will come together. There are constant surprises, and the satisfaction is high when you snap a piece into an empty spot that made no sense.
My friend had a housing crisis this summer. She told me how her desperation led her to the place where she’s currently living—the home she knows is just perfect for her family but would have never chosen for herself.
Another friend has a child in crisis. Things are not what she expected. She is grieving and doesn’t know if or when it will change.
Another one's marriage is in turmoil. Relational groundwork is being ripped up and re-laid, and navigating this new road has its good days and bad days.
And while all cancer is bad, I seem to have a particularly ugly one. Not right now, and hopefully never again. But I don’t know what the next ten years hold.
In short: sometimes we get the satisfying click of the puzzle piece. There are moments where we are privy to seeing the bigger picture. But a lot of times, we don’t.
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In Prayer in the Night, Tish Harrison Warren tells the story of her friend bringing her infant son to the hospital for surgery. As her baby boy was wheeled away, she looked at her husband and said: We have to decide right now whether or not God is good, because if we wait to determine that by the results of this surgery, we will always keep God on trial.
Tish goes on to write: If the question of whether God is real or not—of whether God is kind or indifferent or a bastard—is determined solely by the balance of joy and sorrow in our own lives or in the world we will never be able to say anything about who God is or what God is like. The evidence is frankly inconclusive.
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I’ve been reading an advent devotional called Shadow and Light. In it, author Tsh Oxenreider writes, Faith—our trust that God is good, real, and present—is… an ongoing, inward practice of choosing to believe even when we’re not sure it makes sense. Advent reminds us that we’re made to have faith because otherwise, our good God would have displayed all of life’s answers before us.
We, humans, are vulnerable from the very start. Born as babies that cannot sustain ourselves, we require the constant care of a capable adult to thrive. And yet, our frailty doesn’t decrease as we grow. There are scraped knees and wounded hearts to be had for the rest of our lives. There is disease. There is death.
And yet, God doesn’t remove that vulnerability. Remarkably, he enters into it. Emmanuel, God with us. God with us in the broken heart. God with us in the stiff and loveless marriage. God with us in the loneliness. God with us in the mental illness. God with us in the addiction and guilt. God with us in the mutating genes, cancer, and fear.
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I woke up early the morning after I heard about these genome mutations. I didn’t sleep well, tossing and turning. Wrestling. Worrying. What does the future hold?
My morning advent reading was Psalm 16:8-9:
Because I keep the Lord before me, I shall not be moved.
Therefore, my heart is glad, and my soul rejoices; my body also rests secure.
I couldn’t believe my eyes. I read it again:
My body also rests secure.
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My friend Allison was with me this week in Houston. We buckled down and spent hours upon hours on the puzzle. We were slaves to it, driven to see it come together. And when all of the pieces were united, we found that we were missing a piece. There was one small gap mocking us.
We removed the sofa cushions. We looked under the coffee table. We moved blankets. We got down on our hands and knees. And I thought to myself: Well, this seems about right. Of course, I won’t get to complete the puzzle. This is an allegory for life: do we ever get to see all of the things work together?
Allison would not give up so easily. She kept looking, turning things upside down. Out of the corner of my eye, I spied a little white, cardboard piece pushed far underneath the sofa.
Boom.
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I’m going to glue this pumpkin puzzle together, frame it, and hang it in my office at home. It serves as a reminder of my time here in Houston, the patients I’ve met over these last months, the friends that have cared for me, the community that has supported me from afar, the medical staff that has treated me.
But it is also a reminder that regardless of my circumstances, the puzzle will one day come together. Today, I do not see how my story resolves. I do not have the right eyes to see it, and I do not yet have all of the pieces. It is not my mystery to figure out.
This advent season, I hope that you can embrace your own mysteries—those gaps that don’t make sense—not as something to solve, but rather as a reminder that Someone else holds the pieces. And not with a distant, cosmic cackle… but as the warm brother and friend who entered into our world with you in mind.
Warmest wishes this Christmas,
