The Tale of the Flesh-Eating Bacteria

Sorry for not posting in a while - it has been a bit of a crazy ride these past few weeks!  I have been helping my parents with spring lambing season, which means everything from pregnancy checking ewes (my "extensive" obstetrics knowledge coming in handy!) to bottle feeding lambs to laying over 1000 square feet of sawdust with a pitchfork to ear-tagging over 300 lambs.  In the midst of all that, I also went to Vermont for a few days to participate in a bakery training course at King Arthur Flour Bakery (and to see a part of the country that is even more rural than Indiana).  

James, meanwhile, has had his own share of crazy.  First, he got the flu.  Then, he started coughing up blood...kinda lots. (But apparently, on a relative scale of "Is it cups?" says the doctor, maybe not so much?!) So, while I was in Vermont, he went to the ER and then stayed in the hospital for 5 days while doctors tried to figure out what on earth he had. He was checked out for TB (we doubt it) and pneumonia (we think so). He was placed on IV antibiotics and responded well to the antibiotic, so the doctors have decided it's pneumonia, despite James's lack of more common symptoms (fatigue and fever).  

Here's where it gets interesting - based on the CT done at the hospital, it looks like James has something called "cavitary pneumonia" which means that the pneumonia is creating cavities (holes) in his lung tissue.  It's also known as "necrotizing pneumonia" which "refers to a pneumonia characterised by the development of the necrosis within infected lung tissue."  That is to say - James has a flesh eating bacteria in his lungs.  Yowza.

We met with the pulmonologist yesterday who has placed James back on antibiotic (he felt his initial course from the hospital was too short) and will follow up with a PET/CT at the beginning of May. He expects the cavities to get bigger before James gets better. After the scan, if James is not better, the pulmonologist will scope to see "what is growing down in there." Other options are - an antibiotic resistant strain of bacteria, tuberculosis, a fungal infection, or squamous cell carcinoma. (Hey! We had that before!)  The pulmonologist was quick to say that he does believe that it is bacterial and that this current round of antibiotics should kick it. 

We were able to discuss the degree to which James's health is cancer-related. The pulmonologist believes that James's illness is related to cancer treatment - radiation knocks you down and makes you susceptible to infection. We were "glad" to hear that he had several other patients (who did not have cancer) with this same type of pneumonia in recent months. ("And one guy was WAY worse than you, James!")  [And in truth - part of the problem with James's diagnosis in the hospital was that he just seemed too healthy to have pneumonia.]

So, to sum up & let you know what's on the horizon for us, here are a few things to pray for 
*Pray that James's lungs respond well to the antibiotic, that it IS a flesh-eating bacteria (because there are things that are actually worse!), and that the health of his lungs would stabilize/continue to improve. 

*Give thanks that James IS getting better! James is still coughing, though he is so much better than just a few weeks ago.  He is regularly sleeping through the night now, is regaining energy, has a normal appetite, and is able to eat without any pain. Huge praises! We are so thankful for God's kindness and healing...

*James will have an upper endoscopy on April 15th. So while you're mailing in your taxes, ask that the doctor would be able to clearly assess damage in James's esophagus. It is possible, due to radiation, that his esophagus will need stretched in order to return to its former (proper) size. Ask that the scope doesn't cause any further damage and that healing will come. 

*Pray that the upcoming PET/CT will be knock-your-socks-off fantabulous. (Is that too much to ask?!) The scan will show the extent of his radiation pneumanitis, the cavities from the flesh eating bacteria (is it better?), and...cancer. Let's hope for nothing new and everything better.  Let's ask for another "unbelievable" scan.  We would like that, anyway.  Pray too that the scan will give the doctors (and us) very clear direction for next steps.  (Like, "You're free and clear, pack your bags!" would be nice...)

Thank you, all, for your continued prayers...as we continue to persevere through this we are blessed to know that so many of you continue to persevere in prayer on our behalf. If we keep on asking, He will hear and will, at some point, answer (Luke 18).

Turning Point

hello dear friends...

we have had quite the past few days - long story short, james caught the flu which has given him some really high fevers...which was diagnosed as a "normal" flu (and not some whack-ball stuff from china) when the county health department came to our house...which then meant that james was not able to see his oncologist to get the results from his CT.  (the oncologist basically said, "you can't come here. you're too sick.")

yowza. 

so today, while we wiled away the hours at the urgent care (apparently they turn no one away - ha!), the oncologist called us to tell us the results which left me completely stunned and in shock.

james does not have cancer.

his scan looks (in the words of the oncologist) amazing, beautiful, really great, definitely different, unbelievable...nothing is worse, and everything is better. the largish mass that was remaining on the last scan is shrinking. there are a few remaining sections of inflamed lungs, but hugely decreased. the oncologist even used the word "gone" more than once to describe tumors, inflammation, etc. he sounded as high as a kite elated. he said "unbelievable" a couple of times. 

i told him i was just shocked because i thought for sure he was calling to say james had cancer. he said he was very happy to disappoint me with the news. 

james does not need any further scans (according to the oncologist) for another 4-6 months.

we will be following up with the pulmonologist & surgeon in the next few days to see what can be done with his symptoms.  (who knows but that will also include a GI guy looking at his esophagus....james didn't have GERD before cancer.)  ask that we have clear leading & direction as we continue to pursue james's total healing. 

in the meantime...feel free to join us in shouting the news from the rooftops. =)

we know this news doesn't mark the end of this whole journey...but we are thankful for the part you all played in praying for us, encouraging us, and keeping us focused on the goodness of God. i can only assume you'll keep it up until james is totally healthy. 

New Symptoms, No Diagnosis (Yet)

James is still in China, and started complaining of some new symptoms:
*difficulty swallowing & a sore throat
*chest pain
*back pain that's worse at night, when lying down.

He had been on prilosec, a drug for acid reflux. He doesn't normally have acid reflux, but between large doses of prednisone and radiating a tumor that's close to his esophagus, the doctors thought it a good idea. So while in China, he ran out and his symptoms - which sound a lot like a really bad case of acid reflux - returned. 

His symptoms could also be related to radiation - like if, say, we radiated a tumor adjacent to your esophagus and then (no one is saying it quite this way) burned a hole in your esophagus. Damn.  Oops.

Back pain could be related to sleeping on really terrible Chinese beds.

Or you know what else this all sounds like? Lung cancer. 

But there is no way to know for sure what is causing any of these symptoms, which may or may not be related, without some thorough diagnostics. So James is scheduled for a CT on Tuesday (less than 12 hours after he gets back in country) and then a follow up with the oncologist on Thursday. The oncologist will be able to prescribe next steps, whether that is chemo or a scope of the esophagus, or some different meds. Or something else entirely that only people who have actually been to medical school would know to do.

The good news is that this bumps up James's scan by a couple of weeks. (Originally we were waiting until the end of March for a PET/CT.) If it's a tumor, we will know, and can quickly get started doing whatever we need to do to get rid of that. If it's not a tumor, we can do whatever tests need done now to start getting James well. Yeah! 

For the record, no one is saying it is definitely a tumor. In fact, the oncologist said we could follow up the CT with any of James's doctors, which doesn't make much sense if you're thinking it's a tumor. (Would YOU go see a pulmonologist to deal with a tumor?)

Since scheduling those appointments, James has started back on prilosec, and has seen a reduction in some of his symptoms.  Except his back is in fairly constant pain, I think, and eating has become extremely difficult. (He ate a banana yesterday which turned out to be horribly painful.)  

So just in case you thought that was an exit ramp coming into view on the horizon...you were probably wrong. 

Needless to say, getting James well from all this, even if it is not new tumors, seems like a long haul. 

James, otherwise, is doing great, buoyed by a great visit at home - being loved on by dear family while fed the food you most enjoy is a powerful mental/emotional health boost. Beating all his brothers at cards - like he always does - brings a lot of joy. And, because it was the holidays and people have time, he was blessed with wonderful interactions...hours and hours and hours of conversations in his native tongue...with his family, friends, and ministry partners. As he said yesterday, "It's just physical pain, so I'm okay."

While we wait for next Thursday, please pray
*James will start his journey home on Sunday, arriving late Monday night. Ask for God's lovingkindness to be on display through the kindness of strangers. Based on his flight history since diagnosis, American flight attendants don't deal kindly to coughing passengers, even when they say "I have lung cancer." May God be gracious and allow him a great journey back.
*God's miraculous healing - may James experience a decrease in symptoms (a sudden decrease would be great, IMHO).
*Our continued faith in God's goodness, no matter the CT results. Together with that, pray for our willing, joyful submission to His will. Life as we want it is great, but life lived as He plans it out is best, and our greatest joy. I don't want to go kicking and screaming and dragged down this path.  But sometimes I am. Because God is gracious and ever-patient. 

Thank you, friends! You're the best & we love you! We'll let you know something when we know something. 

Here's a (Good) Thought

This year, I've been taking full advantage of the local library...not only checking out a slew of books for the girls (especially the younger two as we've started doing very basic 'preschool' at home), but also being careful to utilize the "hold" option so I can get the really good Christian books that are scattered throughout the county library system. If we wind back our lives to "normal" we normally live in a place that does not have a public library, nor does it have (perhaps more obviously) a Christian bookstore. So we're left to what can be found among our community of foreign friends, and more likely, what is available on Kindle.  But buying books to support a healthy reading habit can get pricey.  So...needless to say, landing in a place where there is just about every book you want to read...for free...even though it is a public, government institution...this is an amazing privilege that we should be taking full advantage of, friends!!  I find that the less screen time I allow myself, the more time I have to read. Shocking, I know.  And way more enriching.

So...sorry for the long lead in.  I wanted to share this thought.  It's a gem...and also puts words to why it is difficult for people like James and me to come back to the States for an extended period of time, much as we love everyone here. While we understand why we are here, and God has blessed us richly while we have been here in a multitude of ways, AND God has been gracious to allow us to minister to people here, we are still away from what we have been called to do - to reach Chinese people with the good news of the Gospel. That's hard. And it should be.

"We were made to live with no less a drama than the spread of God's eternal reign. We need adventure. We need purpose. We need the adrenaline of stepping out of our comfort zones for a purpose higher than our own well-being. We need all of that, desperately, and we need it to matter for eternity, not just for a moment or for our bank accounts, our pleasure, or our reputations...Nothing else can substitute for kingdom life, because that's how God created us."

Gary Thomas, A Lifelong Love

Okay, yes, this is in a marriage book - a great one.  He goes on to say (just in case you wanted a random, unexpected, kick-in-the-pants reminder about your marriage...)

"In Christian circles, we do a disservice if we try to "fix" marriages without first proclaiming the necessity of fixing our lives on this magnificent obsession, the kingdom of God. I have no desire to offer five steps on how to be a little less miserable in your marriage as you live a substandard, selfish life that isn't set on the spread of God's work." 

Yowza. There we go, friends. Now go out and have a great weekend!

James and the Reunion

For the past several months, James has anxiously been awaiting an opportunity to return home to see his family and to assure them that though he is not cured nor finished with treatment, he truly is okay. We have had tremendous compassion for his family, who we can only assume have been feeling hopeless in the face of James's diagnosis, grieving the imminent doom of their brother, and saddened by their inability to do anything to help from such a great distance.

This month, James finally got the go-ahead from his radiologist, oncologist, pulmonologist, and surgeon that he would be fine to return home for the holidays. (The holidays? Oh yes, the biggest celebration in the world is coming...Chinese New Year.)

Here's an excerpt from an email I received from him tonight, which brought me tremendous joy. I know that many of you have been praying specifically for James's family, that God would be at work in their lives through James's cancer. Be encouraged, and please keep praying for them. 

So I made it home yesterday, and I am definitely glad I'm here. All my family are so anxious to see me, it reminded me of the first time you came to the village. When they saw me, my eldest brother immediately ran to me and hugged me and lifted me up. Third brother was stunned to see me doing so well, and he goes "Nobody would think you are an ill person at all, I have been wasting all my emotions." He just could not believe what he saw. Third sister-in-law said, "When we saw you on screen you always looked pail and puffy, we were just worrying about you." And everybody goes on and on. I have never seen them getting so excited. [Kristen's interjection - if you know Chinese people at all, I can assure you that James is not exaggerating.] 
 
By the evening time the whole house was crowded with relatives and family friends. In front of 40-50 people I was able to share with them about how the Lord led me through this journey, they attentively listened for about an hour, many of them were weeping. 

I am just so glad to be here. 
James

Continue to pray - James needs sleep & he mentioned that his cough is worse than when he was here just a few days ago. Could be a mix of lack of sleep, an arid environment, dust, smoking...cancer.  (wink.)  I am sure that James will have many, many opportunities to speak with family and friends. Pray that he would be strengthened and would take advantage of the opportunities given him.  Thanks, all - you're fabulous!

The Pulmonologist, A Major Problem, Next Steps, and a Flight

James made it to the pulmonologist last week, which turned out to be excellent, if not without a little drama. This pulmonologist is an internal medicine doctor who has worked in critical care for decades...and is definitely not okay with James coughing like he's been doing.  

"I heard you from the other room [examining another patient].  You don't exactly have a subtle cough going on there."

He spent a good 30 minutes with us, trying to get read into the total picture of James's health history which we certainly appreciate - not all doctors have that kind of time - but we know that helps with diagnosis. 

Some of our conversation was somewhat amusing.  
Dr P: Have you been checked for histoplasmosis?
James: No.
Me: Oh, well, see, that's one of the things we initially thought this was since, you know, 30-something non-smokers don't get lung cancer. [Grin.]
Dr. P: [Chuckling] Riiiiight. [Writes up lab order to get that checked.]

Then later on, Dr. P is explaining to us that lungs don't have pain receptors but rather, they have cough reflexes. Thus, when there is something irritating the lung tissue, we don't feel pain. We just cough. So perhaps there is something [else] in James's lungs that is causing the cough.

Dr. P: When you did your bronchoscopy, did the doctors mention anything about blockage?
James: Well, there was the tumor that was blocking my lung that made it collapse.
Me: I think once the doctors saw cancer, they just went with that. 
Dr. P: Ooookay.  

And then, a less amusing portion...
Dr. P: Did the doctors share your CT results with you?
James: Yes.
Dr. P: Did they tell you that you have a blood clot in your chest?
Us: [Eyes wide, mouths agape] Nooooo.
Dr. P: Well, I'd encourage you to get that checked out [with the surgeon who placed the port].

So that was kind of how our week went last week.  

Actually, our week went really well.  Other than thinking through the possibility that my husband could die from an anuerysm or a stroke rather than cancer (the location of the clot was in his port, so if one of those things did happen, it would be death via the cure).  Strangely, James and I were not worried at all. We did think about how it might mess up our plans for the next few weeks, but otherwise were kind of like, "Whatever.  Let's go find out what's next."

Maybe getting diagnosed with a highly fatal the deadliest form of cancer does that to you. You can get news of a potentially fatal blood clot and think, "Oh, something else that could kill me but probably won't. Won't it be interesting to find out what they do to fix this?!"

To make a long story short - we went to the surgeon's office and made an appointment for the following day. (Which actually freaked out some people we told: IF A SURGEON GOT YOU IN TOMORROW, I THINK THIS IS A MAJOR PROBLEM.)  I remained convinced that it was either something that could be easily resolved or just nothing.

As it turned out, we are happy to report that it turned out to be nothing. James does not have a blood clot in his chest, inches from his heart, brain, and lungs. Yeah! 

And we had a really great conversation with the surgeon. ("You look good, James. Do you feel good?") And then an awkward moment when we had to tell him why we were visiting (despite already telling his nurse that upon arrival). Needless to say, the surgeon nearly ran out of the exam room to re-check James's CT. 

The blessing of getting to see the surgeon, though, (other than the no-clot diagnosis) was that he was able to lay out his perspective on next steps. His hope is that James will qualify for surgery at the end of March and that at that time he will surgically remove James's right middle lobe, the site of the initial tumor. If James has that removed, chance of recurrence is reduced by 20%. Sounds good for someone in their 30's. (Of course, less than 2% of people in their 30's getting lung cancer sounds pretty good and we all know how that turned out!)

We do not know yet what next steps will be. 

But it's nice knowing a potential next step. 

Other highlights...
*James does not have histoplasmosis. 
*James is back on prednisone & will remain on it until his end-of-March PET scan. (The pulmonologist really wants to see what happens & looks forward to comparing his scans.)
*James is now using an inhaler. This, together with the prednisone appear to be helping.
*James is now back home with his family in China! He left on Sunday and arrived yesterday. I'll post more (from him) soon. 

Geesh this is a long post. How do we pray?
*Thank God for the pulmonologist and his desire to get to the bottom of James's coughing. 

*Thank God that whether or not the pulmonologist really did see a clot, twenty-four hours later, James did not have one. (We really don't know what happened - was the first doctor confused or did James get healed?  Either way, we figure that God does not get enough credit on a daily basis for keeping us alive. Give Him glory & praise.)

*Thank God that James is healthy enough to return home & that he went with the blessing of all of his doctors. 

*Ask that these meds would work, and that James would be restored to full and complete health. 

Thanks!  More to come...

Back to Square One. Sort Of.

There's been a longish silence over here...mostly because there is not much to report, because for the most part, James's situation has not changed. 

He's still coughing. 

A year is a long time to cough. Even if you have cancer. Or maybe especially if you have cancer. (I mean, people who smoke cough for years and years and apparently it's not that bad.)

So we've gone back to James's doctors to see what can be done. Perhaps a lot. Or perhaps nothing. We are descending into prescribing allergy medicine (just in case there's any post-nasal drip?) and antacids (just in case there's some sort of acid reflux that James is not feeling?) This feels a bit like a descent into quackery, since both doctors believe quite strongly that James's cough is caused by radiation. But at the same time "we" don't want to stay on the one thing that has shown itself effective - prednisone - because of potential long term adverse affects. 

As one of them said yesterday, "We're good at what we're good at. We can keep trying stuff, but I'm not sure we'll fix it, and you're just going to get annoyed."  (Now that sounds like an appropriate diagnosis! Ha!)

The good news is two-fold. (You were starting to think there wasn't going to be any, weren't you?)

First, if you take the long view, James's cough is definitely better. Better than when he first started treatment (no comparison) and even better than before he started this last, most recent round of prednisone. The overall trajectory is heading towards health and wellness. Awesome. 

Second, James has been referred to a pulmonogist. We started this whole journey with a pulmonogist, so maybe this is a good sign, like when you return to start you win the game?! We can only hope. 

The appointment is next Tuesday, so please be in prayer for the doctor, that he would have wisdom in dealing with James's lungs. What James is experiencing is all within the realm of normal, but some relief in the form of healing would be a wonderful, longed for blessing.

Thank you all for your continued prayers for James and for us. Your concern and kindness are such a great source of encouragement to us! We are being given grace and faith in this time of waiting, and we are thankful. Let's all keep on, in hopeful, expectant faith that the God who has done great things will do many more, and will bring this to completion. 

Be strong, and let your heart take courage, all you who wait for the Lord!

Psalm 31:24