Sunday, March 27, 2016

Happy Easter!

Over the course of these last two years, one of the most disarming things that I repeatedly say to doctors is, "James should be dead, and yet here he is." It seems strange to me that in a cancer ward people would still be so hesitant to talk about death, so I am always kind of surprised that everyone else is surprised to hear me so openly make that statement. (What, you mean every other wife doesn't refer to her husband as "a dead man walking"?!) But seriously, friends, are we denying the reality of our own mortality that much, that in the face of infusion tubes, wheel chairs, feeding tubes, massive amounts of costly drugs, pale, bald people who have been stripped of nearly everything that marks "life" and "living" - could we really spend so much as an hour with any one of these patients and not realize that even if they "beat" cancer, that they are going to die, that we are going to die? 

Let me let you in on a little secret - just in case you didn't know - if you are alive reading this right now, it won't always be this way. You are going to die. But don't feel bad. I will too. 

Yet today is Easter Sunday, the day we celebrate the most wondrous event in the history of the world. Jesus, the Son of God, who bore our shame, our debt, our sin; who died the death we should have died; who was buried, and descended into hell...this Jesus was raised to life. The power of sin is broken, the curse has no power over me, and my sin can no longer separate me from a holy, righteous God. Death no longer gets the last word. In fact, one day, that which is mortal is going to be swallowed up by life...and we will actually live forever. 

May we rejoice today, as every day, that Jesus lives. We serve a risen Savior. He is our rescue, and in Him is Life. So this is not just James's story, or my story, but a truth for every one of us who has put faith in Jesus -  we are dying, yet behold, we live (2 Corinthians 6:9). Thank You, Jesus. 

Thursday, March 24, 2016

can you go 10 rounds?

We spent much of yesterday at the hospital, and had the distinct pleasure of seeing how a very large hospital with dozens of doctors, nurses, and support staff, and hundreds of patients that has also fully transitioned to digital records manages care when the computer system shuts down.  Fun times! Lucky for us, actually, not much changed, though we did get to skip one step of check-in, so actually maybe for us it worked better. Ha!

We met with Dr. Einhorn and got the results. James does not have the rare genetic mutation, which means he qualifies for the immunotherapy drug pembrolizumab. (Say that three times fast!) The idea behind immunotherapy is based on the fact that cancer cells have "immune inhibitors" which act like a barrier, preventing your white blood cells from responding to your cancer. They are unable to attack the cancer cells, even though they recognize it as a foreign body that needs killed off. Immunotherapy drugs break down the immune inhibitors, while boosting your body's immune response, which allows your body to attack the cancer cells, and in many cases, kill off the cancer. It is the newest advance in cancer care, and pretty state of the art stuff.

The Plan
James had his first dose of "pembro" (as the insiders call it) yesterday afternoon. It is an IV infusion that takes about 30 minutes...or 2 hours if a nurse can't find a vein. Not that we're speaking from experience or anything. (Ouch.) James will receive these infusions every 3 weeks for one year, which translates to 17-18 doses...a few more than 10 rounds, but not bad! Throughout the year, Dr. Einhorn will be monitoring James through blood work, x-rays, and (hopefully, if insurance doesn't hate us) PET scans.

The Hope
Dr. Einhorn used the word "remission" yesterday, which was really encouraging! We had no idea this was possible apart from a miracle. But yes, over the past few years doctors have seen patients with other cancers use immunotherapy drugs, experience remission, and be effectively cured of their cancer. Unfortunately (or fortunately, however you want to look at it) - this drug is so new in the world of lung cancer that they don't know yet if the remission will "hold." That is, does lung cancer go away only as long as you use the drug, or can you actually be cured of lung cancer? Is remission of even a few years possible after a year of immunotherapy? They don't know, and they know that thus far, nothing has really been that effective for most lung cancer patients. But based on what they've seen with other cancers, they are tentatively hopeful.

Additionally, doctors have seen that patients who have the PDL-1 biomarker respond the best. That is, the higher your percentage of PDL-1, the more likely pembrolizumab is to reduce/eliminate tumors, and the more likely it is to allow you to live longer without progression of disease. With James being a 90% percent match - one of the highest they've ever had - this is all very good news. Needless to say, Dr. Einhorn expects this to be very effective for James, and is expecting he'll experience remission.

The Needs
Okay, so I know this is what you wait so patiently for...you wade through all my mind-numbing (quasi) medical mumbo jumbo to find out how to pray. Thank you! You are so kind. And here you go.

*There is a small risk that James's immune system will be over stimulated, resulting in any kind of "itis" you can imagine (hepatitis, colitis, gastritis, our old friend pneumonitis, etc.). Pray that this does not happen. They have medical ways around it, but better if we don't have to endure that, IMHO.

*James broke out in a rash today. Apparently not too itchy, but it is a direct (common) result of the pembro. Fun times! Pray that it goes away, and that it isn't something he has to deal with every time.

*James's hip is causing a significant amount of pain these days. Dr. Einhorn expects James to feel the positive effects of the pembro in 4-6 weeks, which would mean a reduction of pain. May this drug be a means of God's grace, effectually working in his body, graciously bringing health, healing, and life. And if God would show James mercy in allowing the drug to work faster than it's "supposed" to, well, we would not be surprised...but we would be very grateful.

*Dr. Einhorn has been so kind to be mindful of the fact that we would rather be back home in China. He brings it up just about every time we see him. He has offered to go above and beyond in some ways if it meant that we could return. While we don't currently have plans to return to China long term (we are far from out of the woods), we are hopeful that we might be able to have an extended visit over the summer. To me, sitting where I am right now, this is little more than a dream. But you can pray for that, and we'll see what God does.

God is at work. God is good. And this is far from the end of the story.

But you knew that already, didn't you?
Thanks for hanging in there with us for the long haul. We'll get to the end of all this one day, dear friends, and not only will our joy be that much deeper for all the hardship and sorrows we've endured, but we'll all be better for it.

To God be the glory.


Wednesday, March 9, 2016

I Hate Your Rotten Guts

Okay, so last time I said that the latest report from the oncologist made us feel like we were on a roller coaster. Actually, I think it feels more like this.
LIFE AS SKYDIVING 
while screaming "I HATE YOUR ROTTEN GUTS!!" to cancer, pain, suffering, and death. 
We spent most of our day at the hospital yesterday, perhaps the last time we will need to do that for awhile. We had asked for prayer that the results would be conclusive, and I think God graciously answered those prayers. Here's a summary. 

What We Found Out
*James had two severely restricted airways. The pulmonologist said it is "classic" radiation damage. The airways were "pinholes" too small for the bronchoscope to enter. In one, the pulmonologist was able to inflate a balloon and open it up. Time will tell if it will stay open. In the other (which leads to the right middle lobe), he was able to insert and inflate a balloon, but as soon as the balloon was removed the airway went back to its original size. The pulmonologist also stated that the airway leading to the right middle lobe is so constricted that it will possibly close off completely, resulting in James losing his right middle lobe. Thankfully, if and when that happens, that is the smallest lobe of your lungs, so...you live.  

*The pulmonologist saw no visible tumors. (Yeah! Good news!)

*Pathology was at the bedside and as the pulmonologist was removing tissue samples for biopsy, they found cancer cells. (See above picture for how we feel about that.)

*The conclusion is that James has a recurrence of lung cancer, which is completely likely and, in many ways, expected. There is a reason they track you every 2 months after they think you are in the clear: this crap is aggressive and is likely to recur. They assume that James's hip is metastasized lung cancer. 

Where We Go From Here
*Tissue samples will be sent for genetic testing for one more (rare) mutation. If James does have this mutation, he will start a daily oral chemo pill. The results of this test will take about 2 weeks. 

*Assuming he does not have this mutation, James will start the immunotherapy drug pembrolizumab on March 23rd. This is not chemotherapy, but a relatively new drug that was recently approved for use with lung cancer patients. It is given intravenously once every 3 weeks. Most patients tolerate it very well (ie, much better than chemo) with very few side effects. For those of you who are really interested in research, James does have the PD-L1 biomarker.

How Are You Guys Doing? (No, Really...)
We know that if you're reading this, its because you love & care for us deeply, so we know that this news will be met with sadness, grief, and maybe even anger. I think this is valid, and I think you should let God know. 

To be quite honest, after the doctor's appointment last week James and I both ended up wrestling with God with where this journey seemed to be heading. By the weekend, though, we had both willingly submitted to His plan and were able to pray, "Not my will, but Yours be done." We are very much perplexed, but we do not despair. He has graciously given us His peace.

I think one of the greatest joys of my life came yesterday when I was reflecting on this "sudden" turn of events. I realized that when the doctor called me over to that little glass room in the basement for a consult, I didn't feel that my world was imploding. The word "cancer" came off his lips, and I could accept it. The first time James was diagnosed, we felt lost. We were shocked, stunned, and grieved to the core. Cancer came into our lives and had us in a choke hold. Or maybe it was trying to drown us. This is not to say that God didn't meet us in those times. He did, and He showed Himself present and merciful in some really spectacular ways. 

But this time was so very different. Our future remains incredibly unclear, with all sorts of unknowns. My parting words to the doctor yesterday first expressed my gratitude, and then I said, "So James lives to die another day. That's true for each of us." I don't think I expected the sobering effect that would have on him. Yet if there's only one "gift" of cancer, it is that it makes you incredibly aware of your own mortality. James is going to die. I am going to die. You are going to die. It might not be today, but it is going to be one day. And when all this temporal rubbish passes away and we live in the true reality of the "eternal glory in Christ Jesus" I know we won't be sorry. Not for one millisecond. 

So yesterday it was with joy that I realized - I have changed. God has changed me. I can look cancer in the face and say that I am not afraid. I can look at all the loose ends that are my life, and be at peace with where God has me. I can see all the unanswered questions, and see that I have an opportunity to happily trust Him. I can joyfully accept this path, and I can willingly submit to all He has for us. We do not feel our lives are screeching to a halt, imploding, or spinning out of control. James actually said he was "encouraged" that things weren't as bad as he thought they'd be. We have hope. Hope that is real and sure. This is not the end. And even when death comes...and it will...that is not the end. 

So when I realized that once upon a time...not so very long ago...I struggled to do any of these things, I rejoiced with deep gratitude in my soul. God has changed us, is changing us, and will continue to change us. For His greater glory. Amen and Amen. 

But Please Pray
Okay, so we are feeling emotionally and spiritually bolted together today, but that doesn't mean we don't covet your prayers. We need them now as much as ever. Our faith, peace, and joy are inextricably tied to your prayers for us. 

*Thank God that James's cancer seems to be progressing slowly/slower than normal. One thing that Dr. Einhorn had told us pre-PET scan was that if James's hip was cancerous, there would be multiple bone tumors at this point. But there aren't. Just the one. And no visible tumors in the lungs. Praise God.

*Ask for God's continued "intervention" in our lives. I keep thinking how none of this has gone the way doctors expect/have expected. Pray that that continues, for God to continue to miraculously override the typical path, and that God will use all this "confounding of the wise" to bring glory to Himself. 

*Ask for God's deliverance. I have no idea what that would even look like at this point...what does healing look like when you're set on a path of drug therapy that does not stop until your cancer stops responding? Do you get to a point where you've been doing so well for so long that they decide to see what happens with no treatment? I have no idea. But let's not lose heart, resigning ourselves to the typical outcome (ie, death). I want James to live. Jesus came to give us abundant life. So let's pray for that. 

*Pray for God's clear guidance over the next days, weeks, and months. Where should we live? (Continue with my parents? A house? An apartment? A large-ish box?) What should we do? (Work? Ministry? Sit around for extended periods of time?) What should we drive? (Please something different!) What should we do with our "life" in China? (Sell it? Store it? Keep it? Move it?) How do we manage a restaurant and ministry now that it seems clear we are not returning any time soon? (Uhh....)

*Pray for our girls - who do not yet know their Daddy is not yet well. I hear lots of people talking about praying James is around for them, and healthy for them, for memories of him, and all that. Those are good, fine prayers, and you can continue to pray them. But pray most of all that through all of this, no mater what happens, that this would drive them to God where they can find the love of a perfect Father. May they come to love and trust Him, even through this. No. Matter. What.

Thank you. You're awesome.
And unless you're cancer, I don't hate your rotten guts.

Wednesday, March 2, 2016

the roller coaster ride of our lives...

James and I spent the day at the hospital and came away feeling...um...with mixed feelings.

Long story short: the results of James's PET are inconclusive. As Dr. Einhorn says, the PET can tell you about the presence of something, but it can't tell you what it is.

Step one is to procure the images from previous scans so that they can clearly compare what is (or isn't) happening with James's hip. I guess until now they've been working with reports from the scans rather than actual images. When IU radiology has a chance to look things over, they will give us their opinion on what is happening with his hip. If the latest PET image is brighter (indicating higher metabolic uptake) or larger (showing growth) then they will conclude "cancer." We expect to have results on that by Friday (March 4th).

Step two is to have a bronchoscopy. This will be scheduled for next week. This just got scheduled as I am writing for Tuesday (March 8th). The pulmonologist we met with today specializes in lung malignancies, so I believe we are in good hands. He says that based on the images he saw today he cannot determine if James has a recurrence of cancer or if it is effects from radiation.  (Apparently the whole radiation thing can last a very, very long time. James is still within the window of normal for length of time for symptoms/fallout.) Sadly, he did not mention anything today about a laser (Dang!), but we did talk about using a balloon. (Cool, but less so.)  We expect to have preliminary results from that on Tuesday.

Step 3 would be to determine - in the event that James has cancer - if James has a mutation. There is one final, very rare one that hasn't been tested for. In the (unlikely) event that he tests positive, he goes on an oral medication that is well tolerated and tends to keep the cancer at bay for....a bit.

In the event that all else fails, Step 4 would be to begin immunotherapy at the end of March. James is one of the closest matches they've ever had in terms of potential effectiveness, so Dr. Einhorn believes that should we need to go this route James is looking at (a few) years.

SO...I know, friends, a lot to take in. Not really what we were expecting to hear either. Didn't think you could die from a roller coaster, did you? In the meantime, we again ask you to do what you do best - pray. Pray that James experiences peace and joy in the midst of discouragement. Pray against fear and lack of faith on our part. Pray that God will use all of this - ALL.OF.THIS - for His glory. We know so little...but what we do know is that God is sovereign, He IS using this for His glory, and that everything He does in our lives (everything!) passes through His almighty, tender, loving hands. We (feebly) trust, and He leads, comforts, and (abundantly) blesses.

*thank you*