Wednesday, September 7, 2016

the post I didn't want to write

I have a confession to make.

Last week, James had a PET scan and we got the results.

I could have hopped on here and updated you all right away.  But I didn't, because we wanted a couple of days to process. And then we had a three day weekend which meant we were super busy doing a whole lot of nothing. And, so long as we're being honest, I didn't write to tell you because, well, how do you tell people your husband has cancer (for like the fourth time)?

Actually, James has always had cancer. But at different points along the way the treatment has been deemed working, he's gotten better, he's been declared well, the symptoms fade...and so we all start to feel like maybe this trial will come to an end sometime soonish.  But every time the cancer is actually still there. Given enough time, the cancer shows up in a measurable way.

And so it is this time.

When we saw Dr. Einhorn last week he told us the news we had actually suspected: James is not responding to immunotherapy.

Why not write right away? Because telling people the news they dread to hear is an uncomfortable, crappy job.

But here we are.

And now you know.

The good news is that the radiation appears to have obliterated whatever massive tumor was growing in his hip. (Yeah!) James is no longer on pain meds, no longer favors that hip, and...he actually ran last week, for the first time in two years. (Granted, it was just minutes of chasing Michaela around the yard, but still...running!)

The good news is that James remains off of his inhalers because his cough is diminished/diminishing.

The good news is that the cancer in James's lungs and lymph nodes remains localized and fairly minimal, especially considering that he's not really been treated for nearly a year.

The good news is that James, me, and the girls are not the same people we were two years ago.

Two years ago, on August 30th, we received the diagnosis that James had non-small cell lung cancer...and it felt like an atomic bomb was going off in our lives. We watched, pained, as the word "cancer" started to mushroom and seemingly destroy everything in its path. Everyone sees the upward explosion, but the billowing cloud on the ground that mercilessly devours everything around it was what we felt.

Two years ago, I stifled a sob when we realized that surgery would not be an option.

Two years ago, I wept when the doctor told us that James would need chemotherapy and radiation.

Two years ago, tears streamed down my face as our plane descended toward the hard road of doctors visits, potent drugs, physical pain, and the uncertainty of my husband's future.

Last week, on August 30th, when Dr. Einhorn gave us the diagnosis, we listened, we asked questions, and we left his office.

There was no detonation

no explosion

no tears.

In its place, there was hope. There was confidence. There was peace in the midst of a really (really) uncertain future.

And you might suspect that the point of all this is to say that trials make you stronger. Or to speak about how faith can grow through pain. Or maybe, cynically, to say that after you've been through everything we've been through, you can get to some kind of elevated consciousness where you stop feeling the weightiness of the bad news you've just received.

But you'd be wrong.

A few lines back I said that we are not the same people that we were. But that is really an oversimplification.

Actually, we are the same people. We are still the same weak, fearful people with faltering faith that we were two years ago.

Every morning, we wake up uncertain of the next step, uncertain of who God is, feeling anything but peace...and God graciously, faithfully pulls out the paddles and resuscitates our hearts with His love.

These last two years have given us glimpses of His goodness. At each and every turn of this precipitous journey, we have seen Him come through for us, often in astounding, miraculous ways. We have never been more assured of who He is: faithful, loving, sovereign, the God of all grace. We know that He alone has the power to give and sustain life. Because of this, we can have great hope that He will sustain us.

We have not changed. But we have been given eyes to see Him more clearly, and that makes all the difference.

and now, the brass tacks...
*at this point, James has limited treatment options. Since last November when James's tumors were genetically tested, some new mutations have been discovered which would allow James to be treated with oral chemotherapy. Dr. Einhorn sent James's tumor samples off to be tested for these "new" mutations. It is not likely that he has one, but those who do typically respond very well to the oral chemo.

*James is doing well these days. It's funny (in a way that has made me laugh out loud more than once this last week) when I think about all those months when he was being "treated" by immunotherapy that so many of us remarked how good James we looking, and how James was getting better. His symptoms are actually decreasing, and he's feeling really good. But we know the immunotherapy isn't working based on the to say we don't know the outcome is an understatement.

*over the last week, we have spoken to several people, and the question that only a few people have dared to ask (though everyone wants to) is - how much time does James have left? Not surprisingly, Dr. Einhorn doesn't know, and isn't making any predictions. (Because for all his brilliance, he's still just a man.) Dr. Einhorn described James's cancer this week as "unusual" and "bizarre." Which means that they've never really had a patient like James. He's outside the statistics, outside the "if this diagnosis, then that treatment" formulas. For the first time since we've met him, Dr. Einhorn has stopped saying anything definitively.

We do know that very few people make it out alive from a stage IV lung cancer diagnosis. We also know that James's cancer is localized and progressing slowly. No doctor can predict how quickly it will progress. No doctor can predict what God will yet do. And, thankfully, no disease, no cancer, no doctor can undo what God has planned. The diagnosis is indeed grim. But it's just a diagnosis, merely a statement of what is. If these last two years have taught us anything, a diagnosis is not a definitive predictor of the outcome. (Because if it was, by all accounts, James would already by gone.)

So by all means, pray. You're not off the hook yet! May God be gracious, may God heal, may God lead us through any dark days ahead, may God receive all the glory for all that He's doing in this.

Blessed be the Lord, who daily bears us up.
Our God is a God of salvation, and to God, the Lord, belongs deliverances from death.
~Psalm 68:19-20~

With love & thanks,
~james & kristen


  1. Love you so dearly. The daffodils in the neighborhood continue to remind me to pray.

  2. Continuing my prayers for your family Kristen🙏 I was so in hope that the "new immunotherapy " was something for me to consider but my hopes are shattered by your post 😞 I just celebrated my 5 year anniversary of the diagnosis,and according to Medical dr. I had 4-6 months! I opted out of all Chemo-Radiation. The cancer is in the other breast but I choose to trust God to let me have quality of life remaining. In James case of lungs it's whole different story,I've lost a sisters year ago who signed up for research she had lung cancer😓God hears our prayers and with 3 adorable little girls to raise I feel each day is a gift 😘
    Stay strong and keep the faith🙏