where james gets "famous"

Last Friday we had the chance to speak to Jay, Dr. Einhorn's nurse, and got a small update on things over at IU. 

IU was able to procure samples from St. Vincent's...after a bit of wrangling professional reminding. (It went something like, "This patient is not getting chemo treatment while we wait on you!")  So, there was a bit of delay intially, but things are good now. 

Dr. Einhorn consulted with his partners who have all agreed it is good for James to stop treatment for now. (This made me laugh...I'm sure the other doctors are not slouches, but does anyone disagree with Dr. Larry?!)

Additionally, there's a team of thoracic cancer researchers at IU who have already been made aware of James's case. Their next meeting will be December 17th. James will be one of the patients they plan to discuss. ("Oooh! I'm getting famous!" James said.) They will be reviewing all the results and together will determine the best course of treatment. Jay said that sometimes one doctor sees it as a straightforward case, while another notices something that changes the equation. Pray for God's wisdom to be granted them!

In general, James is feeling much better these days sans chemo. He has been complaining lately of the inability to focus/concentrate when he reads. Pray that his mental acuity will return to him as the chemo works its way out of his body. He is sleeping better and is coughing less and less. Pray that God will completely heal and restore his lungs! I was remembering yesterday how last fall, even into November, James was able to run. Now, because of his lungs, he can't. We are continuing to trust God for great things, and are encouraged by your faith as well. Thank you!!  Have a great week...

larry's second opinion

Happy Thanksgiving, friends! I suppose that you are now rousing yourself from a tryptophan-induced coma (or are about to succumb to such fate)...here's a good little story to keep you amused while you wait on your pancreas to catch up to life. 

Yesterday, James and I went to see Dr. Lawrence Einhorn, an oncologist at the Indiana University Cancer Center. To those outside the world of oncology, that's just another doctor. To everyone else, Einhorn is something like a god. He's the man who treated Lance Armstrong, and he's the man who came up with the treatment regimen that has basically cured testicular cancer. A few weeks ago, I mentioned to a retired-from-Duke oncology researcher that we were planning to see him, and his eyes bugged out in total shock and amazement. "YOU got in to see EINHORN?!" came the flabbergasted reply. I might as well have said, "I'm having tea with the Queen next Tuesday." 

Well, yes, we got in to see him. How? "The luck of God," as my father likes to call it - a coincidence so striking that it's clearly the hand of God. (Spend much time following God and you find out that He is, in all His sovereignty, amazingly "lucky" -- that is, things always "seem" to go His way.) 

Lydia's teacher...of all the teachers she could have had...has a father who was a doctor. That doctor just so happened to be a former colleague of Dr. Einhorn's. Lydia just happens to be the sort of kid who talks about life in a matter-of-fact way, so she didn't think it odd to talk to her teacher and classmates about the fact that "my dad has lung cancer."  Her teacher, of all the responses she could have had, was moved to act on our behalf. 

So there we were.  Meeting Dr. Einhorn. Getting the mother-of-all second opinions. I guess I should say that we were expecting to hear something like, "Sorry 'bout your luck, there's nothing we can do yet, you're doing everything right...contact me in a couple months to see if a clinical trial has opened up." But it played out radically different from that, and I apologize in advance for the length of this post. (Sorry, not sorry.) 

Dr. Einhorn is unsure of James's diagnosis of squamous non-small cell lung cancer (NSCLC). 

Here's why.
1. Squamous NSCLC rarely occurs in non-smokers.
2. Squamous NSCLC usually takes over the entire chest cavity...just "explosions" of tumors all over the right and left sides of the lungs, all the lymph nodes, up into the neck, etc. Strangely, James's tumors have all stayed on the right. (One tumor was so large that it started to cross the midline, but nothing else.)
3. Squamous NSCLC rarely - rarely - metastasizes to bone.
4. Squamous NSCLC that has metastasized to bone does not respond so quickly to chemotherapy. 

This last point is key - Dr. Einhorn spent a lot of time unpacking the timeline of James's "hip tumor." (The one in his right ilium.) The tumor first showed up as a "blip" in a PET scan in May...James started experiencing pain in June...which then became moderate-to-severe pain in July...which then showed up as a tumor in a scan in July...which then responded to chemo pretty much immediately...and was "PET negative" in October. (It was news to us that his hip no longer houses a cancerous tumor...Dr. Gupta had told us that everything was "better." So...wow. WOW.)  Dr. Einhorn actually said that it is "strange" how this tumor responded, and asked more than once if James had ever fallen (which would explain the PET scan "blip" as well). "I am 99% sure this was cancerous in July...but now it's not there. That is strange." (I could almost see him mentally scratching his brain.) 

So here's the plan.
1. James is stopping all chemotherapy until "we" figure out what he's got. Dr. Einhorn was dictating a communication to Dr. Gupta on our behalf to that effect yesterday. And I talked to the scheduling gal; all future appointments have been cancelled.
(James said the visit was worth that news alone...no more chemo...for at least 3 weeks!)

2. Jay, Dr. Einhorn's nurse, is procuring James's biopsy samples from the surgeon. IU-Health will reexamine them to determine if James truly has squamous NSCLC.

3. If it is determined that yes, it is squamous NSCLC, James's biopsy samples will be sent to University of Michigan's genetics lab for testing. It is possible (1-in-3 chance) that James has a genetic mutation that has led to squamous NSCLC. 

If James has one of those mutations, he stops all IV chemo and takes a pill form of chemo that is having remarkable results. No one uses the word "cure" in oncology (or only very rarely) but people are living for years and years on this stuff.

4. If it is determined that yes, James does have squamous NSCLC without a genetic mutation, he stays on one of the chemo drugs he is currently on, gets off the really harsh one with the nasty side-effects, and we stand in awe of what God has done on James's behalf. He has kept it from taking over his chest, he allowed the chemo to work, He removed the tumor from his hip, He has sustained his life, He has allowed a stage IV lung cancer patient to have energy to shoot hoops, He has..., He has...., He has...........

5.  If it is determined that no, James does not have squamous NSCLC, then we first of all say, "Wow. Look what God has done," because there were multiple pathologists in multiple countries who all came to the same conclusion...and that would just be...strange.  If James does not have squamous NSCLC, he gets off all IV chemo, takes a monthly chemo-pill, and...see above for expected results.

I will give you some time for this to all sink in.


Waiting....




Waiting....




Waiting...



Okay.  Now answers to a few questions.

Is it really possible that the diagnosis was wrong?
Yes. Apparently, it happens, and what typically results is the oncologist gets the pathology report and aggressively starts treating the cancer...and the doctor rarely stops to think "Hmm, this isn't adding up..."

Is Dr. Gupta a terrible doctor?
Absolutely not. We remain convinced of his skill, and touched by his compassion. If anyone I knew got a cancer diagnosis, I would refer them without hesitation to him. This experience just goes to show the benefit of a second opinion.

Do you think it would have gone differently if you started with Dr. Einhorn?
Probably not. I think Dr. Einhorn would have taken the same initial course of treatment with James - James was, in fact, treated with Dr. Einhorn's regimen of chemo last fall. Had we started with Dr. Einhorn, we would probably be getting the second opinion from Dr. Gupta...and getting the same news, with Dr. Gupta saying, "This is strange. I am not sure you have squamous NSCLC." These two men are just that good at what they do.

When will you know?
It will take about 3 weeks to get all the results in.

Does the hospital really still have the tissue samples?
Yes. That stuff doesn't get thrown out. It is possible it's not a good enough sample or that there's not enough of it...in which case they would have to go in and get some more from James. (We didn't find out what exactly they will be biopsy-ing since James doesn't have lots of active tumors anymore...but we are comfortable with leaving that to the experts.)

If it's not squamous NSCLC, what does James have?
Dr. Einhorn thinks that James's tumors are acting a lot more like adenocarcinoma.

How can we pray?
We don't know how this is going to play out, but there is obviously a lot of room for God to be at work. Pray that His hand will be strikingly evident. (I always like it when doctors say, "Well, this is strange..."). Pray that God will get the glory!

Did we just find out God worked a miracle?
Yes. No matter what the diagnosis, James was healed of the tumor in his hip. Thank You, Lord.

Can I take my Thankgiving Day nap now?
Yes, you should do that...but not before you give us the chance to say Happy Thanksgiving!!  Now go have a great nap...you earned it. 

what I'm doing for advent

Greetings from the chemo ward, people! Here's some happy for your day - my friend Kari over at Stone Soup For Five has just released her latest study, The Promises. It's a study of the Old Testament prophecies and their fulfillment in Jesus. 

As Kari's editor and chief cheerleader for this project, I will unashamedly say that you should consider joining in for December. Each day's study includes verses from the Old and New Testaments to study, a brief explanation/study notes/thoughtful quotes to ponder, a daily Christmas challenge (dos and dont's for a more meaningful, less stressed holiday), and a doodle page to color. You can even print off extra coloring pages for your kids. It will be both meaningful and fun...a peaceful, relaxing, worshipful way to enjoy the season. (And seriously, some of these pictures are just inspired.)

As she and I collaborated on this, and as the study took shape, I was amazed at the richness that developed as we moved through the prophecies....from a vague notion of Snake-Crusher, to Messiah, to Suffering Servant...to the risen, exalted, reigning King. He is worthy of our worship, and only when we receive Him as He has fully revealed Himself - not only as a baby in the manger, but as crucified Savior, as reigning Prince of Peace - can we truly worship. I can't wait for December 1st so I can dive in (without editing this time!). I'd be so glad to know you joined in...

Stone Soup for Five Advent Study

on death and dying

In the past month, James and I have been grieved by the loss of two dear friends of ours.  Both were men of deep faith, who had given themselves wholly to the Lord. They loved much, and we were the happy recipients of their love and many kindnesses over the years. They will be deeply missed, not only by us, but by literally hundreds of other people who were blessed to know them.  In light of that, some thoughts...

*Attending memorials is no cocktail party, or so I quipped to a friend of mine. This was immediately followed by the thought, “Why not?”  As in, why do we not have cocktails at funerals? What were we thinking?! Something to imagine...and consider for the future. J

*”Yea, though I walk through the valley of the shadow of death, I will fear no evil, for Thou art with me” has been a verse that has repeatedly come to my mind over the past year. (And yes, the Holy Spirit speaks this verse to me in the King James.) We do not fear death, because God is present. He is with us. We have great hope because we know that Christ has conquered death.  However, fear is not the same as grief. We grieve, and grieve deeply. It is good and right to do so. 

*Some days, James seems closer to death than others. Other days, death seems farther away but still the most merciful option in this broken, pained, sin-cursed world. Today, he is getting chemo (did you know we changed chemo days to Tuesdays?) while running a fever. I suppose this is a “feels like death” kind of day if nothing else.

*Have you ever been to the wedding where everyone kind of knew that you were the next one to get hitched? There are no words to express what attending a funeral feels like when you have a terminal illness, and your friends know how sick you are.

*God has specially gifted some people who are able to create space for grief. They don’t try to fix it, speak truth to your pain, or try to reframe your reality. They are pained, and they are present. And that is a gift, both to give and to receive.

*It’s hard not to wonder – Is this the last year we will celebrate Christmas with James?

*One day, while praying for James, while pleading to God for his life, I said, “This is such a small thing for You!” I was rebuked and reminded that it is not a small thing to God. Our pain, our suffering, our grief may be a lot of things, but it is not small. It is not inconsequential to God. It means very much to the One who carried our sorrows and bore our griefs. He feels what we feel, and is pained by our sorrow. If James dies, it will not be a small thing to God. The death of His son James, whenever that is, will be a big deal to God. (Psalm 116:15)

*The song “The Greatness of our God” is strangely, wonderfully comforting these days.  Take a listen.

*John Piper once wrote a devotional on sorrow based on Psalm 126:5,6. Though I read it some 20 years ago, I remember his words that the sower goes out weeping with seed to sow, which means we take our tears with us. Our tears accompany us while we continue our work of living, and loving. There are still sandwiches to be made, embraces to be enjoyed, conversations to savor. Grief does not keep us from living...we will not be held hostage by grief. Rather, we force it come along for the ride.

*There is a grief that actually feels like physical pain. I call it soul-strangling. C.S. Lewis described it as an inability to breathe. Let’s both be right.

*Every truly great tale has some dark chapters, and those stories (and the characters) are better for it. One day, our joy will be much, much greater for the sorrow that we are presently experiencing (1 Peter 4:12,13). Our griefs will be swallowed up and our tears, every last one of them, will be wiped away. I am most sure of this very thing.

*Similarly, this is not the end...some days it feels like it. But then one of us will turn to the other and say, “This is not the end. God is not done writing this.” Even when death comes, that is not the end. There is more.

*C.S. Lewis said that God shouts to us in our pain. God hasn’t yelled at me lately...but I can testify that He has never been more real, more present to James and me than in these days.

And no sky contains, no doubt restrains

All You are

The greatness of our God.

I spend my life to know, and I’m far from close

To all You are,

The greatness of our God

Let's Do That, Shall We?

November is just around the corner, our kids are back in school after two weeks off of school, we have internet access again, our car is running after a short hiatus, and I am getting our life back on track.  Once I get out from under the mountain of laundry and school projects (vocabulary hats! leaf collection! pajama day!), I will post a more general update as well as James's final post in his current series. In the meantime, I listened to the first in J.D. Greear's sermon series, "Multiply." This portion really struck me, for obvious reasons. I hope you're as encouraged by it as I was.

Becoming a Christ-follower means viewing everything in your life as something given to you by God as something to be multiplied for His kingdom...I don’t care who you are, God has put things in your life that He intends for you to multiply...if God has put pain in your life, God intends for you to multiply the blessing that comes through that pain by turning it into testimony of God’s goodness and His faithfulness in the time of trial. You see what it means to be a Christ-follower is you say, “God, if you give me prosperity, I’ll leverage that prosperity for the advance of your Kingdom. And if you give me pain, then I’ll turn my pain into a testimony of Your goodness and faithfulness in the worst situations in life.”

Life with Cancer (Part Three)

Alright, so I have fallen behind in posting James's thoughts. My sincere apologies! If you want to catch up, you can read Part 1 here, and Part 2 here. 

Naturally I divide my cancer journey into two parts: Stage 3 and Stage 4. In Stage 3, between two minor surgeries, aggressive chemo, radiation treatment, pneumonia, running several times to the ER, daily hours upon hours of coughing...I spent a great amount of time dealing with physical things, like pain, exhaustion, side effects. However, by the grace of the Lord, I was able to spend hours of time daily studying my Bible. At the same time I was able to read almost 20 books on topics such as the holiness of God, preaching, prayer, suffering, etc. I had the chance to listen to a lot of great sermons. I also managed practicing guitar and taking my kids out to play. Thus my daily schedule was very predictable. I was able to mix the physical exertion and mental work together.

Yet a careful reader might have noticed that to this point I have not mentioned about prayer. The truth is that my prayer is often so short compared with a day, that I am embarrassed to mention it. A poor prayer life did not happen just lately, it is the epitome of my 15 years of Christian living. I always love reading my Bible, but when it comes to prayer, as JD Greear once said, “If you want to embarrass a Christian, just ask how often he prays.” This is very true of me. I often found my prayer life is just dry, boring, and short. It sounds hard to believe, coming out from a pastor’s mouth, but it is the brutal truth. It does not negate my efforts of working in the field, but the method and focus certainly is wrong. The disciples were wondering why they were not able to cast out certain demons, so they privately asked Jesus the “secret” solution. And Jesus replied to them,” This kind can come out only by prayer.” (Mark 9: 28-29). It is surprise to us how the disciples would do that, yet is it not even more unfathomable that we would use our own weapons instead of the power of the Holy Spirit to rob souls from Satan’s world?  

The situation being at Stage 4 completely changed my prayer life. There are two big differences between life at Stage 3 of cancer and Stage 4. In my life with Stage 4 I have spent more time on Bible studying and meditation instead of just reading and gaining knowledge. I spend more time listening to the Bible while shooting hoops or walking. In place of reading more books, I pray.

And God again arranges the perfect time for me to achieve my goal. For some reason, Stage 4 chemo drugs often keep me awake. During these three plus months, my average sleep has not being more than 4 hours per day (including daily naps). I often can get up at two or three o'clock to study and pray. Surprisingly, even with so little sleep, when I come to study and pray I always have the energy to do it. It reminds me of Daniel, although he only ate vegetables and drank water, he looked healthier and better nourished than the young men who ate the royal food.  And strangely, from the first time I really started to call on the Lord to now I have not had one instance of boring, dry prayer. The length of prayer is getting longer and longer. The frequency of prayer is increasing more and more.  I have never known prayer to be so rich, joyful and sweet.

A good example is that one morning as I lay prostrate in front of the Lord (this is the first time of my life ever), He reminds of the verse I just read in Psalm 65:4 “Blessed is the one you choose and bring near, to dwell in your courts! We shall be satisfied with the goodness of your house, the holiness of your temple!” This verse tells me that only the people blessed by God have the chance to worship Him, to adore Him. Only the people God chooses to draw near can really come to His holy temple and bow down. And this is the only place our longings can be met, where we can be truly satisfied. All these can happen, yet the only reason is because His mercy has extended to us.

The inspiration changes my prayer. The very action of bowing down to pray is a blessing from God. Without God’s mercy, we would never be able to come to Him, let alone worship Him. Prayer is supposed to be a privilege not a burden, or a responsibility, or something we as Christians are supposed to do. The truth is that all godly men and women in history are first and most of all pray-ers. The more we know God, the more we experience God, and the closer we walk with God, then the deeper we like to bow in front of the living God. The deeper we bow, the more we trust have; the more we trust, the more we bow more deeply and more frequently.

The Results Are In...

Hello Everyone - thank you for praying us through yesterday! I am relieved to tell you that the results from James's PET scan are very, very good. Dr. Gupta, ever the effusive one, said, "It's a beautiful scan, really."

*the lymphatic tumors in James's chest and the one in his hip are not growing and are "better" and "clearer." I think I heard "smaller" too...
*the tumors are up-taking less dye, which means that their metabolism is slowing, which means they aren't (as) rapidly dividing, which means...their imminent death, maybe.
*there are no new tumors, which, really, is just a huge relief. James's chemo brain is really just a sleep-deprived chemo brain...not a brain tumor. And his left hip hurts from time to time, not because of a new tumor, but because he favors that leg over his tumor-affected right one.

Whew.



Whew.


Maybe we should have a group exhale. Ready? (Wheeeeeeeeeeeew.)

With this great (!) news, though, comes one of the biggest BUTs in our lives.

BUT - James does not get to stop chemo. Because the chemo regimen is working, it is now considered to be something like "maintenance chemo." The doctor explained it to us like a diabetic, who always needs insulin. I am thinking it is like someone in renal failure in need of weekly dialysis.

Thus, as long as James can handle the chemo, we keep at it. Three weeks on, one week off. Three weeks on, one week off. "This is a marathon," Dr. Gupta told us. Three weeks on, one week off.

I wish you all could have seen my face when he told us this.

Dr. Gupta did tell us that if things were looking good, and James was feeling good, we could take a break.

"What is that, like weeks, months?" I asked.

"Weeks.  A few weeks," came the reply.

So...you all can keep praying! Continue to pray for the miraculous. It won't be long, and we'll be entering a realm beyond any doctor's expertise. Most Stage 4 lung cancer patients live weeks or maybe months past their diagnosis. Ever so slim a chance to make it a year. That's what happens when you're 80 and you've smoked your whole life. So of course a weekly chemo regimen that keeps you alive a few more months makes all the sense in the world.

But what to do with the 40 year old who is otherwise incredibly healthy? And what does treatment look like if God healed James, and all his scans started to run clean? (God has already miraculously sustained his life past the "normal" and "average.")

We don't know.

They don't know.

So we do, for now, what we do to treat everyone else.

Three weeks on, one week off....

I'm sure there's a prayer request in there somewhere, but I am not sure where it begins and ends. Thank you -- thank you -- for continuing to remember us.

You are loved!
--james & kristen