Hello again - just about to shake off some winter chill with a short run, but before I do here's a brief update on James.
He had his port out on Monday, and just as we all had prayed, he came out of anesthesia superbly. In fact, it was his best surgery recovery to date. Thank you, friends!
I had expected to get a chance to speak with the surgeon, and while he did give me an update on James post-surgery, it was only the briefest of conversations. He actually seemed like he had forgotten who we were. (I know! I was as shocked as you are!)
On the other hand, I did get to talk at length with the surgery care coordinator about many things that God has done over this past year plus, starting with bringing me back to the surgery waiting room so soon...when there were definitely times I didn't even know if we'd ever be back. We continue to be in awe, and are so thankful when God gives us the chance to share with someone and we actually have the words to say that encourage, strengthen, or inspire.
God has been so gracious, and we can testify that He has faithfully carried us every step of the way. Thanks for being here to cheer us on.
Continue to pray for God's healing for James, for a continued reduction of his cough, for pain from surgery and this last year of cancer to subside, and for James to feel, well....WELL.
All for now...be sure to check in later this week for other fun stuff like book recommendations and my new recipe faves from 2015. (Fingers crossed!)
Wednesday, January 13, 2016
Saturday, January 9, 2016
A Man, A Plan, A Scan...China
Hi friends! Trusting that you had wonderful, bless-ed holidays and, like me, have sufficiently dug out of the new year haze to feel more hopeful than overwhelmed. James had an appointment with Dr. Einhorn this week which gave us greater understanding as to what just happened. And, we have something of a plan! Exciting times ahead for sure.
James remains disease-free.
When we asked Dr. Einhorn how they made this determination, he graciously responded with a chuckle and a, "Well, that's a fair question." Apparently, once you've had cancer, in a sense you never really have a "clean" scan. Because of previous tumors, because of scarring, because of necrosis (one of my all-time favorite medical words!) there are lots of causes for "blips" on a PET which need to be monitored but do not warrant further treatment.
Instead, oncologists look for "progression" of the disease which looks like new tumors or growth of previous tumors. James has none of this.
James does not currently need further treatment.
If you recall, last summer James had two spots that showed up on his PET scan which then led to more chemotherapy. One, a lymph node, and the other, a spot on his hip (ilium). The lymph node in and of itself was not enough to warrant chemotherapy, as it was considered one of those typical "I had cancer in the last six months" blips. The bone, however, was understood to be metastatic lung cancer which needed immediate attention.
Yet Einhorn's team knows the following about squamous lung cancer - only in the rarest of cases does it metastasize to bone, and, as Dr. Einhorn remarked, "would that everyone's metastatic cancer responded so well to chemotherapy." That is to say, the tumor in James's hip really shouldn't have responded the way that it did. It is so unusual, in fact, that they remain unconvinced that it was ever actually a tumor. (On the other hand, James & I believe that it was, and that God miraculously intervened. Choose your worldview, and the interpretation of events will follow, I suppose.)
So, with the hip tumor "mysteriously" gone, James is considered disease free and thus no longer needs treatment.
Important Next Steps
1. On Monday, January 11 at 10:45, James will return to his thoracic surgeon to have his port removed. This is a huge milestone. I am sure it will feel a lot like freedom. Pray that James comes out of anesthesia quickly (this is usually a struggle), pray for healing without complications, and pray that we'd have the opportunity to testify to the surgeon, Dr. Freeman. A Christian colleague of his described him as an honest, ethical man who is otherwise lost. May God's dealings with James speak to his heart.
2. James will be allergy tested on Tuesday...he is currently on an asthma inhaler & it has helped tremendously with his coughing. We believe that James has allergies, and think that having allergies on top of compromised lung function (due to scarring from cancer, chemotherapy, and radiation) may be contributing to his cough. It will be interesting to get a perspective from another discipline within the medical community...we've been encouraged that James was actually able to run a few hundred feet a couple times this week after being on the inhaler. (Something he's not been able to do in over a year!) Continue to pray for complete restoration & healing.
3. Dr. Einhorn will continue to follow-up with James every two months this year. However, he understands our desire to return to China and has no problems with us returning as long as James continues to have clean scans. He would like to get James to the summer, so whether that means we return after May's follow up or wait until after July's follow up is yet to be determined. Einhorn seemed comfortable with both, though of course it all depends on how James is doing. Pray for wisdom, and pray that we would perceive and follow God's leading.
4. In the meantime, James gets to return home to celebrate Chinese New Year with his family. It will be a joyous celebration, no doubt. Pray that God would work mightily among his family and friends, that they would be humbled and give glory to God, and that the Spirit would use James's testimony to convict them of righteousness and judgment.
5. James will have a full-body PET in March to check once more on his hip "tumor." We may never really know what that was...but maybe the PET scan will give them some helpful information. James does have occasional pain there, and while he is awfully young to have arthritis, that is one possibility. Pray that God continues to heal this area...or that doctors can determine what it is to treat it accordingly.
6. For the long term, James will continue to be monitored by Dr. Einhorn. Every four months for years 2-3, every 6 months for years 4-5, and every year after 5 years. Dr. Einhorn has several "international" patients that he monitors, and is completely comfortable getting scans from James from overseas. Interestingly, Dr. Theera, the oncologist who first diagnosed James when we were in Bangkok, Thailand, was once a colleague of Dr. Einhorn's at MD Anderson. It is possible that James will return to Bangkok & Dr. Theera for at least some of his future scans.
As this is turning into a lengthy post, I won't say any more but to thank you all again for all the many, many prayers on our behalf and to say that God continues to be gracious. James is regaining strength, hair, and eyebrows...and we are thankful.
James remains disease-free.
When we asked Dr. Einhorn how they made this determination, he graciously responded with a chuckle and a, "Well, that's a fair question." Apparently, once you've had cancer, in a sense you never really have a "clean" scan. Because of previous tumors, because of scarring, because of necrosis (one of my all-time favorite medical words!) there are lots of causes for "blips" on a PET which need to be monitored but do not warrant further treatment.
Instead, oncologists look for "progression" of the disease which looks like new tumors or growth of previous tumors. James has none of this.
James does not currently need further treatment.
If you recall, last summer James had two spots that showed up on his PET scan which then led to more chemotherapy. One, a lymph node, and the other, a spot on his hip (ilium). The lymph node in and of itself was not enough to warrant chemotherapy, as it was considered one of those typical "I had cancer in the last six months" blips. The bone, however, was understood to be metastatic lung cancer which needed immediate attention.
Yet Einhorn's team knows the following about squamous lung cancer - only in the rarest of cases does it metastasize to bone, and, as Dr. Einhorn remarked, "would that everyone's metastatic cancer responded so well to chemotherapy." That is to say, the tumor in James's hip really shouldn't have responded the way that it did. It is so unusual, in fact, that they remain unconvinced that it was ever actually a tumor. (On the other hand, James & I believe that it was, and that God miraculously intervened. Choose your worldview, and the interpretation of events will follow, I suppose.)
So, with the hip tumor "mysteriously" gone, James is considered disease free and thus no longer needs treatment.
Important Next Steps
1. On Monday, January 11 at 10:45, James will return to his thoracic surgeon to have his port removed. This is a huge milestone. I am sure it will feel a lot like freedom. Pray that James comes out of anesthesia quickly (this is usually a struggle), pray for healing without complications, and pray that we'd have the opportunity to testify to the surgeon, Dr. Freeman. A Christian colleague of his described him as an honest, ethical man who is otherwise lost. May God's dealings with James speak to his heart.
2. James will be allergy tested on Tuesday...he is currently on an asthma inhaler & it has helped tremendously with his coughing. We believe that James has allergies, and think that having allergies on top of compromised lung function (due to scarring from cancer, chemotherapy, and radiation) may be contributing to his cough. It will be interesting to get a perspective from another discipline within the medical community...we've been encouraged that James was actually able to run a few hundred feet a couple times this week after being on the inhaler. (Something he's not been able to do in over a year!) Continue to pray for complete restoration & healing.
3. Dr. Einhorn will continue to follow-up with James every two months this year. However, he understands our desire to return to China and has no problems with us returning as long as James continues to have clean scans. He would like to get James to the summer, so whether that means we return after May's follow up or wait until after July's follow up is yet to be determined. Einhorn seemed comfortable with both, though of course it all depends on how James is doing. Pray for wisdom, and pray that we would perceive and follow God's leading.
4. In the meantime, James gets to return home to celebrate Chinese New Year with his family. It will be a joyous celebration, no doubt. Pray that God would work mightily among his family and friends, that they would be humbled and give glory to God, and that the Spirit would use James's testimony to convict them of righteousness and judgment.
5. James will have a full-body PET in March to check once more on his hip "tumor." We may never really know what that was...but maybe the PET scan will give them some helpful information. James does have occasional pain there, and while he is awfully young to have arthritis, that is one possibility. Pray that God continues to heal this area...or that doctors can determine what it is to treat it accordingly.
6. For the long term, James will continue to be monitored by Dr. Einhorn. Every four months for years 2-3, every 6 months for years 4-5, and every year after 5 years. Dr. Einhorn has several "international" patients that he monitors, and is completely comfortable getting scans from James from overseas. Interestingly, Dr. Theera, the oncologist who first diagnosed James when we were in Bangkok, Thailand, was once a colleague of Dr. Einhorn's at MD Anderson. It is possible that James will return to Bangkok & Dr. Theera for at least some of his future scans.
As this is turning into a lengthy post, I won't say any more but to thank you all again for all the many, many prayers on our behalf and to say that God continues to be gracious. James is regaining strength, hair, and eyebrows...and we are thankful.
Wednesday, December 23, 2015
on infusing faith to others
As we've shared our news, we have been so humbled to see how our story has strengthened the faith of our fellow brothers and sisters in Christ. That God would be able to use this whole circumstance not only for our good, but for the blessing of others is simply astounding. Below is one of the emails we received that was a tremendous encouragement to James and I, and such an expression of rejoicing with those who rejoice. Our friend Mike relates events from the first week of November, when we traveled south to participate in a missions conference.
This truly is a miracle only the Lord could orchestrate -- and to me, it's not only an extraordinary outcome, but this news comes at a miraculous time of the year.
Kristen and James, I'll never forget hearing your testimony during the dinner at the conference just a few short weeks ago. It had many of us in tears as we listened to you describe not only what both of you had been through so far, but the way you continued to put your trust in God, despite what seemed inevitable.
At the end of the conference when we interviewed the two of you on camera, that faith continued to show through, even as James had to step aside because his cough was so bad that night.The two of you were graceful in your acceptance of the circumstances -- and you demonstrated that grace and your faith in every word you said.
And now, to hear this amazing news is such a blessing to all of us. When I spoke praise in my prayers yesterday at dinner, my wife -- who'd heard your dinner testimony -- burst out in tears. We've been celebrating with you ever since.
In homage to our Old Testament roots, there's an old Chanukah blessing that goes like this, "....Ba-ruch A-tah Ado-nai E-lo-he-nu Me-lech Ha-olam she-a-sa ni-sim la-avo-te-nu ba-ya-mim ha-hem bi-zman ha-zeh." It translates to, "...Blessed are You, Lord our G-d, King of the universe, who performed miracles for our forefathers in those days, at this time."
Clearly, God is not finished performing miracles. I'm grateful that He revealed His hand in this way...and Kristen and James, I unabashedly thank God on your behalf. May He continue to bless you both -- and may your story infuse faith into the lives of people everywhere.
Thursday, December 17, 2015
Now Here's News Worth Mentioning...
Over the past few days, news has been trickling in from Jay, Dr. Einhorn's nurse. We first heard that James's cancer diagnosis had not changed. After a review of pathology, it was determined that James had squamous cell NSCLC with no genetic mutation...which means no form of pill chemo for treatment. And then we discussed the potential use of immunotherapy drugs. (Blech, but...well...okay.)
And then...THEN...the following news this afternoon.
After review of medical records by two "Tumor Boards" (i.e., the nerdy club you get to be in as an oncologist) and two teams of geneticists, Dr. Einhorn has determined
1. James is disease free
2. James does not currently need any treatment, and
3. "Cure" is possible, meaning that it is statistically probable that James will survive 5 years or more.
WOW.
Just, wow.
We have been overjoyed to get to share this news with some of you in person/over the phone, and it has been, by far, one of the highlights of our lives to share what God has done and to laugh and cry with you as we rejoice together. Words cannot express our gratitude to you who so faithfully walked this hard road with us. God was so gracious in giving us such awesome friends who loved and supported us every step of the way.
I am sure you have questions - we do too! We will meet with Dr. Einhorn in January where we can ask all the questions we have and get insight into how best to proceed. For the near future, Dr. Einhorn plans to monitor James every 4 months via lab work and x-ray.
In the meantime, continue to pray for James's health...he is happy to report that nearly every day he feels better than the one before. He is back to walking at very nearly a normal pace, can breathe, and says that his lungs feel so much clearer. His cough is greatly reduced, he is sleeping well, and has all kinds of energy. Apparently his eyebrows will be the last great holdouts for recovery - ha! But as one of our friends said, "I'm going to keep on praying, because I want to see James FULLY RESTORED." Yes, and AMEN. Pray too that God will give us wisdom as to how we return to "regular scheduled programming" in terms of our lives. Our return to Asia will be one of the issues discussed with Dr. Einhorn.
Now go and have an awesome Christmas...with hearts a little lighter, and just a tad more joyful than you had hoped for. It's our gift to you.
xoxo
--james & kristen
And then...THEN...the following news this afternoon.
After review of medical records by two "Tumor Boards" (i.e., the nerdy club you get to be in as an oncologist) and two teams of geneticists, Dr. Einhorn has determined
1. James is disease free
2. James does not currently need any treatment, and
3. "Cure" is possible, meaning that it is statistically probable that James will survive 5 years or more.
WOW.
Just, wow.
We have been overjoyed to get to share this news with some of you in person/over the phone, and it has been, by far, one of the highlights of our lives to share what God has done and to laugh and cry with you as we rejoice together. Words cannot express our gratitude to you who so faithfully walked this hard road with us. God was so gracious in giving us such awesome friends who loved and supported us every step of the way.
I am sure you have questions - we do too! We will meet with Dr. Einhorn in January where we can ask all the questions we have and get insight into how best to proceed. For the near future, Dr. Einhorn plans to monitor James every 4 months via lab work and x-ray.
In the meantime, continue to pray for James's health...he is happy to report that nearly every day he feels better than the one before. He is back to walking at very nearly a normal pace, can breathe, and says that his lungs feel so much clearer. His cough is greatly reduced, he is sleeping well, and has all kinds of energy. Apparently his eyebrows will be the last great holdouts for recovery - ha! But as one of our friends said, "I'm going to keep on praying, because I want to see James FULLY RESTORED." Yes, and AMEN. Pray too that God will give us wisdom as to how we return to "regular scheduled programming" in terms of our lives. Our return to Asia will be one of the issues discussed with Dr. Einhorn.
Now go and have an awesome Christmas...with hearts a little lighter, and just a tad more joyful than you had hoped for. It's our gift to you.
xoxo
--james & kristen
Monday, December 7, 2015
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 ofwrangling 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...
IU was able to procure samples from St. Vincent's...after a bit of
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...
Thursday, November 26, 2015
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.
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.
Tuesday, November 24, 2015
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.
Stone Soup for Five Advent Study
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...
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