Got the CAT scan done (10 minutes from request to test, then 1 minute wait to get back in with our doc), Dr. Thompson talked to radiologist and bone doc while we were getting everything done (there was a spot on L4 vertebra) and all say NO PROBLEMS!!!!!
Radiologist said that the chest thing is "absolutely secondary to the surgery, and will eventually go away." NO NEED TO FOLLOW UP AT DUKE! That's how confident they are that everything is okay.
Bone guy/radiologist says the L4 thing is nothing to worry about at all, unless you have metastatic cancer, which Dee Dee doesn't have.
That's it folks. Done. See you in a year for routine follow-up. She still technically has cancer, but in the best imagineable scenario. We'll never truly "forget about it," but we'll come pretty close.
We'll talk more later, we're still processing now. And after we eat at Pannekoeken one more time, we're coming HOME!
Tony (smiling from ear-to-ear)
Thursday, May 31, 2007
(Mostly) Good news
Good morning! Due to timing, I've got to keep it brief, which as you all know is not the easiest thing in the world for me!
Blood tests: good
Stomach/abdomen CAT scan: good, no signs of spread
Endoscopy: good. No evidence of increased tumor growth, no signs of other "normal" cancer
Praise the Lord! Her doc is really very pleased, very encouraged that this is the ultra-rare form of gastric carcinoid that will still be here, pretty much just like it is today, 45 years from now. He has agreed to have it followed on a yearly basis, instead of every six months. He does not think that she needs yearly CAT or octreoscans, just endoscopy. If that looks suspicious or different, then the other tests would be done, but only if the endoscopy has changed adversely.
So, since nothing can ever be perfectly simple, there is one wrinkle. The ultrasound showed a well-circumscribed 3 cm X 3 cm lesion in her mediastinum (Chest), basically in the area that the chest surgery was done down at Duke a few months ago. He does not think it is cancer, but thinks that it is either a reactive lymph node to having had the surgery, or that they did not get all the lesion during the surgery. Since Duke did all the CAT scan stuff on the lesion before, he does not have much baseline info to use for comparison.
Mayo being Mayo, however, he picked up the phone and got her worked in for a chest CAT scan, which she is having done right now, then he will see her as soon as she has completed that test. We should still make our flight on time. I do not think we will have any firm answer on the lesion today, but rather will have Mayo forward the results to the surgeon at Duke so that he can compare. Also, we will have his surgical notes and operative reports, CAT scans, etc. sent from Duke to Mayo, so that everyone has everything. Duke was supposed to have done this months ago, but either they didn't or we didn't sign the right forms, who knows. Over the next few weeks we'll get this sorted out.
I will leave you with this quote from Dr. Thompson, who again impressed us: "(Pending the chest issue) I think that you are really pretty healthy."
That, friends and family, is good news.
We look forward to being home soon!
Tony
Blood tests: good
Stomach/abdomen CAT scan: good, no signs of spread
Endoscopy: good. No evidence of increased tumor growth, no signs of other "normal" cancer
Praise the Lord! Her doc is really very pleased, very encouraged that this is the ultra-rare form of gastric carcinoid that will still be here, pretty much just like it is today, 45 years from now. He has agreed to have it followed on a yearly basis, instead of every six months. He does not think that she needs yearly CAT or octreoscans, just endoscopy. If that looks suspicious or different, then the other tests would be done, but only if the endoscopy has changed adversely.
So, since nothing can ever be perfectly simple, there is one wrinkle. The ultrasound showed a well-circumscribed 3 cm X 3 cm lesion in her mediastinum (Chest), basically in the area that the chest surgery was done down at Duke a few months ago. He does not think it is cancer, but thinks that it is either a reactive lymph node to having had the surgery, or that they did not get all the lesion during the surgery. Since Duke did all the CAT scan stuff on the lesion before, he does not have much baseline info to use for comparison.
Mayo being Mayo, however, he picked up the phone and got her worked in for a chest CAT scan, which she is having done right now, then he will see her as soon as she has completed that test. We should still make our flight on time. I do not think we will have any firm answer on the lesion today, but rather will have Mayo forward the results to the surgeon at Duke so that he can compare. Also, we will have his surgical notes and operative reports, CAT scans, etc. sent from Duke to Mayo, so that everyone has everything. Duke was supposed to have done this months ago, but either they didn't or we didn't sign the right forms, who knows. Over the next few weeks we'll get this sorted out.
I will leave you with this quote from Dr. Thompson, who again impressed us: "(Pending the chest issue) I think that you are really pretty healthy."
That, friends and family, is good news.
We look forward to being home soon!
Tony
Wednesday, May 30, 2007
G'night
Okay, I know I was supposed to write earlier, and all I can say is that it has been a good, but tiring day. We finished testing this afternoon, and then slept for a while. We did some walking, ate at Pannekoeken again, and slept some more.
So here's the update:
NO SICKNESS! None for Dee Dee, none for me, none at all. She never got nauseous, and that is a true blessing. I felt weird until early afternoon, but then it just sort of went away (strangely enough, about an hour after I posted that prayer request - coincidence? I think not!). Was mine sympathy, or fatigue, or stress? Probably. Why was hers so much better this time? Prayer. No biopsies during the endoscopy. I don't care right now, I'm just happy she did so well.
GREAT PROCEDURE! Out of all the endoscopies she has had, she felt that this was the easiest of all. They put her under so slowly that she felt alike she was just talking to the nurses and then was out. She never felt anything during the procedure, simply woke up after it was all over. She didn't even have a sore throat afterward. Beautiful, simple, done right. And a good thing, since I wasn't allowed to be with her, even in recovery. Bottom line is that she was really pleased with the physical aspect of all her testing this trip.
Now we wait for tomorrow and the summary appointment with Dr. Thompson. We have no results from anything yet. All tests are completed, and we meet with the docs to talk Thursday at 9:00 Rochester time. Our prayers now are focused on the results and our discussion tomorrow.
I will try to blog after the appointment tomorrow, but it will be tricky from a timing standpoint. I'll do my best, probably around noon eastern time.
Thank you all for everything. Almost over, and that's good.
Tony
So here's the update:
NO SICKNESS! None for Dee Dee, none for me, none at all. She never got nauseous, and that is a true blessing. I felt weird until early afternoon, but then it just sort of went away (strangely enough, about an hour after I posted that prayer request - coincidence? I think not!). Was mine sympathy, or fatigue, or stress? Probably. Why was hers so much better this time? Prayer. No biopsies during the endoscopy. I don't care right now, I'm just happy she did so well.
GREAT PROCEDURE! Out of all the endoscopies she has had, she felt that this was the easiest of all. They put her under so slowly that she felt alike she was just talking to the nurses and then was out. She never felt anything during the procedure, simply woke up after it was all over. She didn't even have a sore throat afterward. Beautiful, simple, done right. And a good thing, since I wasn't allowed to be with her, even in recovery. Bottom line is that she was really pleased with the physical aspect of all her testing this trip.
Now we wait for tomorrow and the summary appointment with Dr. Thompson. We have no results from anything yet. All tests are completed, and we meet with the docs to talk Thursday at 9:00 Rochester time. Our prayers now are focused on the results and our discussion tomorrow.
I will try to blog after the appointment tomorrow, but it will be tricky from a timing standpoint. I'll do my best, probably around noon eastern time.
Thank you all for everything. Almost over, and that's good.
Tony
A bit ofter 10:00 a.m. in rainy Rochester
Part one of the octreoscan is over, thankfully. She is tired and sore (this test is a bit like my brother's idea of torture!). Yesterday the CAT scan lasted ~45 minutes. She was in the tube, with the machinery about 1-2 inches from her face, with her arms and legs strapped down to prevent movement. She said that she kept thinking that Randy would have to be sedated first (he really dislikes tight spaces!). Today, the octreoscan required her to lie on her back with arms stretched fully over her head for an hour, and will probably require more of the same later today.
Currently she is in the endoscopy procedure. They knocked her out (I assume) about 30-45 minutes ago, and she should be in the procedure now. It will last at least 45 minutes, then an hour or more in recovery before the anesthesia is fully gone and she will be clear to leave this unit. This is my first bout of real anxiety this trip. This was the test that they asked me to come and observe last time, and where I was confronted visually with this amazing field of tumors inside my sweet wife. I am in the waiting room today, and all I can sy is that waiting rooms are boring, lonely places not terribly conducive to prayerful, worshipful waiting. I have read a good bit, prayed a good bit, talked to strangers, paced, stretched and prayed some more.
By the way, please pray that I am not getting sick. I have felt pretty queasy this morning, and am praying that this goes away quickly. Dee Dee suggested that I go back to the hotel, given that she was going to be behind the secret doors for 2-3 hours, but I couldn't leave. Thanks.
I'll write later today, after she is done with all the tests.
Bod bless y'all!
Tony
Currently she is in the endoscopy procedure. They knocked her out (I assume) about 30-45 minutes ago, and she should be in the procedure now. It will last at least 45 minutes, then an hour or more in recovery before the anesthesia is fully gone and she will be clear to leave this unit. This is my first bout of real anxiety this trip. This was the test that they asked me to come and observe last time, and where I was confronted visually with this amazing field of tumors inside my sweet wife. I am in the waiting room today, and all I can sy is that waiting rooms are boring, lonely places not terribly conducive to prayerful, worshipful waiting. I have read a good bit, prayed a good bit, talked to strangers, paced, stretched and prayed some more.
By the way, please pray that I am not getting sick. I have felt pretty queasy this morning, and am praying that this goes away quickly. Dee Dee suggested that I go back to the hotel, given that she was going to be behind the secret doors for 2-3 hours, but I couldn't leave. Thanks.
I'll write later today, after she is done with all the tests.
Bod bless y'all!
Tony
Early morning, Day 2
Well, good morning! We made it through the night without real nausea, so Praise God! She is in day two octreoscan right now, at least part one. She will do this scan for about an hour, then we go for the endoscopy/ultrasound, then back for more octreoscan. The only other time she got nauseous last time is with the endoscopy, due to the high number of biopsies. We do not expect so many biopsies this time, so remain hopeful that this trip will pass without one of the chief miseries of the past trips.
It seems to me that the tests can be divided into two categories this time. One category is for those tests designed to tell us if the cancer has spread. These include the octreoscan and CAT scan. The likelihood is that these will be normal. The second group, the endoscopy and ultrasound, are to look specifically at the known cancer in the stomach. So, while all of it has been worthy of prayer, the test at 9:00 (Rochester, MN time) today is the one that has the greatest likelihood of directing our course of therapy as we go forward. I'll post again after I see how things are going.
Our kids seem to be doing well. They are definitely having fun with their friends! Caleb, Gabe and Anna Grace are with one family, and Samara, Micah and Josiah are with another (THANK YOU Comptons and Shearins!). Micah has summed up their overall attitude well; every time we talk he says, "Mommy, I hope you don't die, and I hope it doesn't hurt very much." We had a sweet time of tears and prayer with them on our back porch before we left. Great kids, and we realize how much God has blessed us with them all.
We'll talk/post again soon.
Tony
It seems to me that the tests can be divided into two categories this time. One category is for those tests designed to tell us if the cancer has spread. These include the octreoscan and CAT scan. The likelihood is that these will be normal. The second group, the endoscopy and ultrasound, are to look specifically at the known cancer in the stomach. So, while all of it has been worthy of prayer, the test at 9:00 (Rochester, MN time) today is the one that has the greatest likelihood of directing our course of therapy as we go forward. I'll post again after I see how things are going.
Our kids seem to be doing well. They are definitely having fun with their friends! Caleb, Gabe and Anna Grace are with one family, and Samara, Micah and Josiah are with another (THANK YOU Comptons and Shearins!). Micah has summed up their overall attitude well; every time we talk he says, "Mommy, I hope you don't die, and I hope it doesn't hurt very much." We had a sweet time of tears and prayer with them on our back porch before we left. Great kids, and we realize how much God has blessed us with them all.
We'll talk/post again soon.
Tony
Tuesday, May 29, 2007
Quick prayer request
So we're nearly done with today, and I have one request remaining for day one. She has just started drinking the truly horrid "Drink of Misery" that she believes has been the chief culprit in her nausea in times past. If you could pray that the next few hours pass with no nausea, and that she would sleep well. Thanks.
By the way, Randy, thanks for the anecdote, and for being a lifelong best friend.
Tony
By the way, Randy, thanks for the anecdote, and for being a lifelong best friend.
Tony
Update
Well, today got busier! As Dee Dee and the doc from the first test today looked at her schedule, it became apparent that she had a 5-hour gap today, but chaos tomorrow. One test, the full-body CAT scan, requires fasting the day of the test, and it was set for tomorrow at 2:00 p.m. So, despite the protests of the receptionist at the CAT waiting area, I called her primary doc and his office sort of pulled rank and got Dee Dee in for today. This is good, since she is already fasting, and it loosens up tomorrow's schedule as well. Please pray that the two tests this afternoon (CAT scan at 2:30, octreoscan at 3:30) will go off without a hitch. The timing of the two tests is pretty tight, so they are all acting like we are really taking a big chance. She had the octreoscan injection at 11:30 a.m., and they have to start the actual scan almost exactly 4 hours after the injection, so the CAT really has to go smoothly.
Also, pray for us to have patience. She is so ready to get past this, and has so little control over the disease itself, that the machinery of the medical system is frustrating.
Thanks,
Tony
Also, pray for us to have patience. She is so ready to get past this, and has so little control over the disease itself, that the machinery of the medical system is frustrating.
Thanks,
Tony
Mayo, Day One
Well, I am writing from the same waiting room from which I posted months ago, and I must say that familiarity does not offer much in the way of solace. We have really not done too much medically as yet; it is 10:40 a.m. here, and no official tests have been completed. She is getting the nuclear medicine injection for the octreoscan first, then bloodwork, then day one of the octreoscan is this afternoon from 3:00 - 6:00. Tomorrow is the big day, at least from a medical procedures standpoint.
Travelling yesterday was fairly uneventful. Planes were crowded, but airports not too bad. When did the airlines decide that pretzels or nuts should be sold, not included?!?! Rude......
We found a new place to eat here in lovely Rochester last night. Pannekoeken, a traditional Dutch restaurant, serves this cool Dutch-version pancake with fruit, called (you guessed it) pannekoeken. It made us think of our friends the Newbranders, who were missionaries in Amsterdam for several years.
Not a whole lot of anxiety right now with either of us. More a sense of resolve, with a bit of trepidation. Just ready to be done with the next two days. I actually think there will be a bit more anxious thoughts prior to the Thursday appointments with the head doc as we review all the results.
Thank y'all for praying and loving us, and I'll write more later.
Tony
Travelling yesterday was fairly uneventful. Planes were crowded, but airports not too bad. When did the airlines decide that pretzels or nuts should be sold, not included?!?! Rude......
We found a new place to eat here in lovely Rochester last night. Pannekoeken, a traditional Dutch restaurant, serves this cool Dutch-version pancake with fruit, called (you guessed it) pannekoeken. It made us think of our friends the Newbranders, who were missionaries in Amsterdam for several years.
Not a whole lot of anxiety right now with either of us. More a sense of resolve, with a bit of trepidation. Just ready to be done with the next two days. I actually think there will be a bit more anxious thoughts prior to the Thursday appointments with the head doc as we review all the results.
Thank y'all for praying and loving us, and I'll write more later.
Tony
Tuesday, May 22, 2007
Less than a week....
not that anyone is counting! We fly up to Rochester on Monday of next week, and the testing begins on Tuesday. It will last all day Tuesday and Wednesday, then we meet with the docs to review everything on Thursday morning. We are scheduled to fly home on Thursday afternoon.
Thank y'all for praying for our hearts the past couple of weeks. I would say that we bottomed out shortly after that post was written, but have noticeably rebounded some since then. Praise God! (I know our kids praise Him that we've rebounded!!) And as the trip approaches, and we get a bit more tense, we have not gotten angry or loud or whiny or any of the things that would have made it miserable. At least, not yet! I have plenty of time between now and then to sin mightily against my kids and my wife!
I am praying for wisdom as we go on this trip. I want to understand more fully the 40-50 year scenario. I know that there are three possibilities from the testing, and I want to understand them better. First, there is no change at all, and we get another 6-month reprieve. Second, the cancer is still confined to the stomach, but has changed in such a way that even Mayo says we should do the surgery. Third, it has left the stomach and gone to another organ. Well, I want to understand the second scenario better; what exactly would have changed to make them feel this way?
I want to talk more about diet. With traditional cancers, it is believed by the holistic medicine folks that eliminating red meat, doing the whole juicer thing, and more of what I used to call voodoo will lower cancer risk. Is that true with carcinoid cancer? Dee Dee has eliminated red meat and poultry from her own diet, and her Mother's Day gift this year was a professional-grade juicer. Certainly these may be healthy regardless of the cancer, but is there any impact? I know that at the very least it has given her something concrete to do, to feel that she is exerting some proactive effort against this disease.
Another question that I plan to ask is why do we do such frequent follow-up? Given the emotional toll, and the fact that we are most likely going to see no change, can we spread the visits out? Also, there was mention in one article that I read in one of the gastro journals that suggested that long-term carcinoid, when associated with pernicious anemia (which we know she has) and chronic atrophic gastritis (which will be investigated at this visit), carries greater risk of traditional cancers of the gut. Does she have the atrophic gastritis? What are the ancillary risks? Can they be lessened? Is there risk of such frequent nuclear/radioactive medicine tests?
So, lots of tests to take, and lots of questions to get answered. Thanks for praying for clarity of mind, and for wisdom, not only fro the doctors but for us as well.
What else, what else....
You notice that in my listing of medical possibilities above, I did not list "God healing her and taking away the cancer." I don't know why. I know it represents some degree of lack of faith in the grand power of God, and of His love and mercies for us, but I don't know why I am struggling here. I have seen God save my son when we were told there was no hope. I have seen my children recover from concussions with amnesia and life-flight helicopter rides. So why the...hesitancy... to pray big?
Partly I think it is because I am a product of my profession. For almost 20 years I have had patients refuse to do what we told them to do, because they "trusted God to heal them at a prayer service," and they have invariably lost vision. I have become skeptical of the whole line of thought, at least to a degree. I think this represents amazing arrogance on my part, and I am praying that the Spirit would convict me of this and lead me to repentance.
I think another part of it is fear. When we counsel young married couples on basic marriage skills, one of the topics we cover is sharing honestly your desires and needs. This is often scary! It is one thing if your needs are unspoken and unmet. But it is far worse if they are articulated and then unmet! I am a bit afraid of God saying, "No." I think this is a lack of trust in His genuine love for me, and a belief that He might withhold a blessing. I am praying that the Spirit would convict me of this and lead me to repentance.
I know that Dee Dee is praying that it will be healed. I am scared silly about this. If it is unchanged, which is her doctors' "best-case", then they and I will be happy. I am afraid that Dee Dee will be crushed. Her faith is bigger than mine, her understanding of the renewed mercies of our God every morning is deeper than mine. I want to protect her from further disappointment, and I suspect that this shows some desire on my part to be God for her. In other words, to provide/protect/heal her, because I am not so sure that He is doing a good enough job as God in her life right now. I am praying that the Spirit would convict me of this and lead me to repentance.
And yet, even as I sit here with tears, typing at nearly 2:00 a.m. because once again this trip is too big to allow sleep (or my faith is too small...), I have hope. My dear friend Scott posed a hypothetical question sometime before the cancer was diagnosed. "Tony, if God told you that in about 5 years you and He were going to be amazingly close, in a level of communion that just blows away your notions of that relationship, would you say yes? And what if He told you that first, He was going to take you down some very dark and difficult roads. Would your answer be the same?" If I truly trust in the God of Scripture, then my answer must be a resounding "YES! Yes God, I will follow where you lead, and go where you ask. I will endure the difficulties, because you are my shield and my fortress. I will persevere, because you strengthen me. I will run well the race you have set before me, because I love to bring you glory, and it is only through you that I run at all."
I was talking to a Jewish physician yesterday. She was in for an exam, and we talked about Dee Dee. This is a wonderful woman, and an excellent, caring physician. She said that she will never understand the unfairness of illness. I responded that I absolutely do not question the fairness of this; God ordained it and that makes it fair. I told her that I believe that the same God who decreed that my wife would have cancer decreed all the days and events of our lives, and that He has prepared us to run this race well. And I told her that as He girds us for this battle, He proves His love for us anew. She cried a bit, and said that the Jewish God, the God of the Old Testament, is not a God of love but of severity. She said that the normal life for a Jew is one of cyclical cowering before the fearsome throne of an angry, somewhat capricious God. I sensed a longing in her for the God I described, an Abba Father God; but she closed that door quickly. I thanked her for her concern for us, and she closed by saying, "Well, I don't pray, but I will think very positively for you both." How sad! My heart broke for her, and breaks now for everyone who thinks of God in that way.
I guess, however, that all the fears and lack of trust that I mentioned for myself a few paragraphs ago reflect that my heart goes too easily back to the desert, to wander with the Israelites. I, too often, cower; when God is offering to hold me in His lap, I quake at His feet. Just as the Israelite nation, when provided with manna, I ask to go back to Egypt. Just as my Jewish physician friend/patient, who thinks that it would be great if God were genuinely loving, but fears that it is not so. Are any of us that radically different or immune to the Israelite sin of doubt? Thank You, Spirit, for this fresh conviction. Make me believe your Word, as you tell me to boldly approach your throne; a throne not of arbitrary judgment or fear, but of grace.
Thank you all for approaching the throne of mercy and grace on our behalf. There are times when I realize that many of you have greater faith than I, and I am glad you're on our team.
Tony
Thank y'all for praying for our hearts the past couple of weeks. I would say that we bottomed out shortly after that post was written, but have noticeably rebounded some since then. Praise God! (I know our kids praise Him that we've rebounded!!) And as the trip approaches, and we get a bit more tense, we have not gotten angry or loud or whiny or any of the things that would have made it miserable. At least, not yet! I have plenty of time between now and then to sin mightily against my kids and my wife!
I am praying for wisdom as we go on this trip. I want to understand more fully the 40-50 year scenario. I know that there are three possibilities from the testing, and I want to understand them better. First, there is no change at all, and we get another 6-month reprieve. Second, the cancer is still confined to the stomach, but has changed in such a way that even Mayo says we should do the surgery. Third, it has left the stomach and gone to another organ. Well, I want to understand the second scenario better; what exactly would have changed to make them feel this way?
I want to talk more about diet. With traditional cancers, it is believed by the holistic medicine folks that eliminating red meat, doing the whole juicer thing, and more of what I used to call voodoo will lower cancer risk. Is that true with carcinoid cancer? Dee Dee has eliminated red meat and poultry from her own diet, and her Mother's Day gift this year was a professional-grade juicer. Certainly these may be healthy regardless of the cancer, but is there any impact? I know that at the very least it has given her something concrete to do, to feel that she is exerting some proactive effort against this disease.
Another question that I plan to ask is why do we do such frequent follow-up? Given the emotional toll, and the fact that we are most likely going to see no change, can we spread the visits out? Also, there was mention in one article that I read in one of the gastro journals that suggested that long-term carcinoid, when associated with pernicious anemia (which we know she has) and chronic atrophic gastritis (which will be investigated at this visit), carries greater risk of traditional cancers of the gut. Does she have the atrophic gastritis? What are the ancillary risks? Can they be lessened? Is there risk of such frequent nuclear/radioactive medicine tests?
So, lots of tests to take, and lots of questions to get answered. Thanks for praying for clarity of mind, and for wisdom, not only fro the doctors but for us as well.
What else, what else....
You notice that in my listing of medical possibilities above, I did not list "God healing her and taking away the cancer." I don't know why. I know it represents some degree of lack of faith in the grand power of God, and of His love and mercies for us, but I don't know why I am struggling here. I have seen God save my son when we were told there was no hope. I have seen my children recover from concussions with amnesia and life-flight helicopter rides. So why the...hesitancy... to pray big?
Partly I think it is because I am a product of my profession. For almost 20 years I have had patients refuse to do what we told them to do, because they "trusted God to heal them at a prayer service," and they have invariably lost vision. I have become skeptical of the whole line of thought, at least to a degree. I think this represents amazing arrogance on my part, and I am praying that the Spirit would convict me of this and lead me to repentance.
I think another part of it is fear. When we counsel young married couples on basic marriage skills, one of the topics we cover is sharing honestly your desires and needs. This is often scary! It is one thing if your needs are unspoken and unmet. But it is far worse if they are articulated and then unmet! I am a bit afraid of God saying, "No." I think this is a lack of trust in His genuine love for me, and a belief that He might withhold a blessing. I am praying that the Spirit would convict me of this and lead me to repentance.
I know that Dee Dee is praying that it will be healed. I am scared silly about this. If it is unchanged, which is her doctors' "best-case", then they and I will be happy. I am afraid that Dee Dee will be crushed. Her faith is bigger than mine, her understanding of the renewed mercies of our God every morning is deeper than mine. I want to protect her from further disappointment, and I suspect that this shows some desire on my part to be God for her. In other words, to provide/protect/heal her, because I am not so sure that He is doing a good enough job as God in her life right now. I am praying that the Spirit would convict me of this and lead me to repentance.
And yet, even as I sit here with tears, typing at nearly 2:00 a.m. because once again this trip is too big to allow sleep (or my faith is too small...), I have hope. My dear friend Scott posed a hypothetical question sometime before the cancer was diagnosed. "Tony, if God told you that in about 5 years you and He were going to be amazingly close, in a level of communion that just blows away your notions of that relationship, would you say yes? And what if He told you that first, He was going to take you down some very dark and difficult roads. Would your answer be the same?" If I truly trust in the God of Scripture, then my answer must be a resounding "YES! Yes God, I will follow where you lead, and go where you ask. I will endure the difficulties, because you are my shield and my fortress. I will persevere, because you strengthen me. I will run well the race you have set before me, because I love to bring you glory, and it is only through you that I run at all."
I was talking to a Jewish physician yesterday. She was in for an exam, and we talked about Dee Dee. This is a wonderful woman, and an excellent, caring physician. She said that she will never understand the unfairness of illness. I responded that I absolutely do not question the fairness of this; God ordained it and that makes it fair. I told her that I believe that the same God who decreed that my wife would have cancer decreed all the days and events of our lives, and that He has prepared us to run this race well. And I told her that as He girds us for this battle, He proves His love for us anew. She cried a bit, and said that the Jewish God, the God of the Old Testament, is not a God of love but of severity. She said that the normal life for a Jew is one of cyclical cowering before the fearsome throne of an angry, somewhat capricious God. I sensed a longing in her for the God I described, an Abba Father God; but she closed that door quickly. I thanked her for her concern for us, and she closed by saying, "Well, I don't pray, but I will think very positively for you both." How sad! My heart broke for her, and breaks now for everyone who thinks of God in that way.
I guess, however, that all the fears and lack of trust that I mentioned for myself a few paragraphs ago reflect that my heart goes too easily back to the desert, to wander with the Israelites. I, too often, cower; when God is offering to hold me in His lap, I quake at His feet. Just as the Israelite nation, when provided with manna, I ask to go back to Egypt. Just as my Jewish physician friend/patient, who thinks that it would be great if God were genuinely loving, but fears that it is not so. Are any of us that radically different or immune to the Israelite sin of doubt? Thank You, Spirit, for this fresh conviction. Make me believe your Word, as you tell me to boldly approach your throne; a throne not of arbitrary judgment or fear, but of grace.
Thank you all for approaching the throne of mercy and grace on our behalf. There are times when I realize that many of you have greater faith than I, and I am glad you're on our team.
Tony
Monday, April 23, 2007
Musings on Bruce Willis
Okay, I'm back! Bear with me for a moment as I make a bad analogy....If you saw the movie "Armageddon", which was roundly panned by critics, you will remember that Earth was about to be destroyed by a giant, angry asteroid. Enter Bruce Willis to try to save the day. As this knowledge became known, you may imagine the emotional hole that the citizens of this fine planet began to feel.
I bring this up because, while we have known that as this Mayo trip approached we would fall into some degree of emotional hole, we didn't really know when the "fall" would begin. We had hoped we would have a month, and that in the future it would be of shorter duration and more shallow depth with each passing trip to the clinic.
We did not get a full month.
The trip is in about 5 weeks (May 28th), and we realize now that we began the descent about 2 weeks ago. The general feeling of impending yuckiness, if not all-out misery, seems to have begun, and has really sapped our strength and joy for the last few days. Dee Dee has been feeling tired, short of patience, somewhat-to-very sick (colds, etc.), and we think it has a lot to do with the stress of the coming trip. I find myself thinking about the cancer more regularly than in the last few months.
One of the weird things about her cancer is the fact that we never will be "cured." We'll never say, "Dee Dee had cancer back in 2007, but has been in remission for 5 years." She is simply always going to have cancer. So we know, as we head to Mayo, that they are going to find cancer, again. [Barring, of course, a miracle from our God, who is certainly able to do exactly that!] We also know that the tests are pretty rotten. Each time that she has had this particular series of tests, she has gotten amazingly ill. The extreme nausea has lasted about 24 hours, with residual weakness and milder nausea another 12-18 hours. Obviously, we are not looking forward to the trip for those reasons.
The other reality that has struck me lately has been more sobering, at least to me. It is the realization that every single time we ever go for follow-up, the basic question being asked is, "Does Dee Dee get to live, or is she now dying from this cancer?" We have chosen not to do the surgery. We are very comfortable with that decision. We know that the likelihood of her cancer leaving the stomach are between <1% (Mayo's estimate), 1-2% (MD Anderson's), 1-5% (Johns Hopkins), and 15% (Duke's and Mt. Sinai's). We also recognize that if it ever leaves her stomach, it is too late to do the surgery, and at that moment we will realize that her clock is officially ticking. If it goes to small intestine, the clock shows ~15 years. If it goes to her liver, lungs or pancreas, the clock shows 3-4 years. No treatment. No surgery. No options.
When the cancer was first diagnosed, we had a two week window where we knew that all the tests being done were to determine if she were going to live or die from the cancer. What I did not realize is that we will go through that same ordeal, that same emotional battle, every six months. Because we know the crux of the question, the window this time is just longer. For the first time, I find that I am a bit concerned about her emotional/mental state as we go through years and years of that question being asked over and over. Not second-guessing the decision, but just a new wrinkle to pray about.
So, we begin again. I ask that you all begin to pray again, and I realize that many of you have never stopped. Thank you! Pray that we would have health, and peace, and patience with each other and our kids. This is tough enough on them, they sure don't need a crabby version of their folks making it harder. Pray that either the cancer would be gone, or at least reduced. Pray, certainly, that it has not spread. Pray that she would not get so sick this time. Pray that travel goes well.
By the way, Bruce Willis saves Earth by becoming a martyr and destroying the asteroid (which was the size of Texas!) What we need here is for God to bless science and medicine with medical devices to blow up the carcinoid, removing the threat and restoring peace and health (grin). I know, as far as analogies go, this is not one of my best. But, my brother Randy and I love the movie, so I knew at least he'd enjoy the reference.
It is amazing how many secular productions are based on a Christ-typology, isn't it? In Armageddon, sin=asteroid, earth=well, it equals earth and all it's inhabitants; and the only way to save it is through the sacrifice of a man. Please, now, don't yell at me for equating Bruce Willis with Jesus! I'm just pointing out that even screenwriters are influenced by Scripture, though they would probably deny it. Check out Armageddon if you haven't seen it, and you'll see what I mean. Same is true of Green Mile (innocent man takes on the sickness of others to resotre them to health), written originally by Stephen King. Same in Shawshank Redemption, also by Stephen King: innocent man, saves another after personal abuse and shame.
One caveat with these, by the way; they are rated R for language and violence, so be forewarned.
When did this become Ebert and Clark at the movies????? Am I supposed to ask you to save me an aisle seat or something like that??
Bless y'all!
Tony
Psalm 4:8
By the way, given the less frequent nature of the blog for the past few months, I'd love it if you could maybe email or talk to a few of your fellow readers to let them know the situation, and that I am cranking up the blog-o-matic again. Thanks!
I bring this up because, while we have known that as this Mayo trip approached we would fall into some degree of emotional hole, we didn't really know when the "fall" would begin. We had hoped we would have a month, and that in the future it would be of shorter duration and more shallow depth with each passing trip to the clinic.
We did not get a full month.
The trip is in about 5 weeks (May 28th), and we realize now that we began the descent about 2 weeks ago. The general feeling of impending yuckiness, if not all-out misery, seems to have begun, and has really sapped our strength and joy for the last few days. Dee Dee has been feeling tired, short of patience, somewhat-to-very sick (colds, etc.), and we think it has a lot to do with the stress of the coming trip. I find myself thinking about the cancer more regularly than in the last few months.
One of the weird things about her cancer is the fact that we never will be "cured." We'll never say, "Dee Dee had cancer back in 2007, but has been in remission for 5 years." She is simply always going to have cancer. So we know, as we head to Mayo, that they are going to find cancer, again. [Barring, of course, a miracle from our God, who is certainly able to do exactly that!] We also know that the tests are pretty rotten. Each time that she has had this particular series of tests, she has gotten amazingly ill. The extreme nausea has lasted about 24 hours, with residual weakness and milder nausea another 12-18 hours. Obviously, we are not looking forward to the trip for those reasons.
The other reality that has struck me lately has been more sobering, at least to me. It is the realization that every single time we ever go for follow-up, the basic question being asked is, "Does Dee Dee get to live, or is she now dying from this cancer?" We have chosen not to do the surgery. We are very comfortable with that decision. We know that the likelihood of her cancer leaving the stomach are between <1% (Mayo's estimate), 1-2% (MD Anderson's), 1-5% (Johns Hopkins), and 15% (Duke's and Mt. Sinai's). We also recognize that if it ever leaves her stomach, it is too late to do the surgery, and at that moment we will realize that her clock is officially ticking. If it goes to small intestine, the clock shows ~15 years. If it goes to her liver, lungs or pancreas, the clock shows 3-4 years. No treatment. No surgery. No options.
When the cancer was first diagnosed, we had a two week window where we knew that all the tests being done were to determine if she were going to live or die from the cancer. What I did not realize is that we will go through that same ordeal, that same emotional battle, every six months. Because we know the crux of the question, the window this time is just longer. For the first time, I find that I am a bit concerned about her emotional/mental state as we go through years and years of that question being asked over and over. Not second-guessing the decision, but just a new wrinkle to pray about.
So, we begin again. I ask that you all begin to pray again, and I realize that many of you have never stopped. Thank you! Pray that we would have health, and peace, and patience with each other and our kids. This is tough enough on them, they sure don't need a crabby version of their folks making it harder. Pray that either the cancer would be gone, or at least reduced. Pray, certainly, that it has not spread. Pray that she would not get so sick this time. Pray that travel goes well.
By the way, Bruce Willis saves Earth by becoming a martyr and destroying the asteroid (which was the size of Texas!) What we need here is for God to bless science and medicine with medical devices to blow up the carcinoid, removing the threat and restoring peace and health (grin). I know, as far as analogies go, this is not one of my best. But, my brother Randy and I love the movie, so I knew at least he'd enjoy the reference.
It is amazing how many secular productions are based on a Christ-typology, isn't it? In Armageddon, sin=asteroid, earth=well, it equals earth and all it's inhabitants; and the only way to save it is through the sacrifice of a man. Please, now, don't yell at me for equating Bruce Willis with Jesus! I'm just pointing out that even screenwriters are influenced by Scripture, though they would probably deny it. Check out Armageddon if you haven't seen it, and you'll see what I mean. Same is true of Green Mile (innocent man takes on the sickness of others to resotre them to health), written originally by Stephen King. Same in Shawshank Redemption, also by Stephen King: innocent man, saves another after personal abuse and shame.
One caveat with these, by the way; they are rated R for language and violence, so be forewarned.
When did this become Ebert and Clark at the movies????? Am I supposed to ask you to save me an aisle seat or something like that??
Bless y'all!
Tony
Psalm 4:8
By the way, given the less frequent nature of the blog for the past few months, I'd love it if you could maybe email or talk to a few of your fellow readers to let them know the situation, and that I am cranking up the blog-o-matic again. Thanks!
Monday, March 19, 2007
Hello Again!
Well, Hello again! I know, I know, I've been a bad blogger. No updates in 6 weeks! Several of you folks have gently reminded me that I need to be a bit more regular in the updates; thank you for your graciousness, and for reminding me that a lot of folks care very much for us.
One of these friends (thank you Jill!) made the comment that hopefully "No news is good news?" In a real way that is true. I'm not sure what it says about my own character that I write like crazy when everything is difficult or scary, and not too much when it is smooth and comfortable, but that's the way I seem to function. Basically, we are learning a new life-pattern, a new calendar cycle.
Every six months or so, we will go to Mayo for about 4 days. Between trips, not too much will happen. Right now, we are in the calm in the cycle. We return to the storm in late May. What I expect is that we will coast along pretty well for about 4 - 4 1/2 months, half-forgetting all the great lessons we learned the last time we were in the storm. Lessons like dependency and weakness before God; humility; the willingness to receive aid and comfort from the body of Christ at work; our complete need of the Holy Spirit to guide and direct; things like that. Then, about 6 weeks before the next trip, we'll start to be re-broken before Him.
That is when the emotional aspect will kick back into the game. I suspect that Dee Dee is already beginning to think about the cancer more, to anticipate the tests and procedures, etc. As we get even closer, as we coordinate child care, time off from work, the details of the trip, I will not be surprised to see us have some emotional "bottoming out." My prayer is that it will not be accompanied by spiritual bottoming. Then, we'll go to Mayo, and the physical aspect smacks us around again. Last time, many of the tests made her quite ill, so we are already praying that she will get through them this time without such nausea and discomfort.
One of the reasons that I have not written sooner is that 4 weeks ago I had surgery on my right shoulder. I had big bone spurs, which were cutting the bursa and rotator cuff. The orthopedic surgeon (who said that I was simply getting old and wearing out!) sawed off ~ 3/4 of an inch of two bones, stripped the bursa, and repaired the rotator cuff. I go to PT (physical therapy, or pain and torture, depending on your perspective) twice a week, and they tell me the full recovery is 6-8 months. Getting old is not for the faint of heart!
We are quite busy right now, as I am sure you all are as well. Caleb made the Wake County Home School all-star varsity high school baseball team. He is a freshman, and he and his best friend Whit, also a freshman, are on this team of juniors and seniors. They play all over the place, all the time, so the Clark Suburban has been rolling up the miles! Their first tourney was in Atlanta, and they have games all over central and eastern NC, as well as another tourney in Marietta, GA and in Pensacola, FL. This has been a terrific experience for him, and we have appreciated the godly men who are coaching the team. This team finished 6th and 3rd in the last two home school World Series, so we'll see what happens this year.
My friend Reid, whose wife died suddenly, seems to be doing well. I think that he is somewhat consumed with the simple details of life, with working, parenting during a time like this, visiting with all the out-of-town family that comes to visit, etc. I appreciate your continued prayers for him and his kids.
I will try to write at least once a month for now, and obviously more as we get into the Mayo deal again in May. Thank you all for your faithful prayers, for the emails and cards, for the surprise visits. One church, which we do not attend, has faithfully sent her at least one card a week since the first diagnosis (Yay Salem!). Thank you all for this tangible expression of love. If there are ways we could pray for you, please let us know. We pray in general for you when we see the notes/etc., but would love to pray more specifically.
Blessings!
Tony
One of these friends (thank you Jill!) made the comment that hopefully "No news is good news?" In a real way that is true. I'm not sure what it says about my own character that I write like crazy when everything is difficult or scary, and not too much when it is smooth and comfortable, but that's the way I seem to function. Basically, we are learning a new life-pattern, a new calendar cycle.
Every six months or so, we will go to Mayo for about 4 days. Between trips, not too much will happen. Right now, we are in the calm in the cycle. We return to the storm in late May. What I expect is that we will coast along pretty well for about 4 - 4 1/2 months, half-forgetting all the great lessons we learned the last time we were in the storm. Lessons like dependency and weakness before God; humility; the willingness to receive aid and comfort from the body of Christ at work; our complete need of the Holy Spirit to guide and direct; things like that. Then, about 6 weeks before the next trip, we'll start to be re-broken before Him.
That is when the emotional aspect will kick back into the game. I suspect that Dee Dee is already beginning to think about the cancer more, to anticipate the tests and procedures, etc. As we get even closer, as we coordinate child care, time off from work, the details of the trip, I will not be surprised to see us have some emotional "bottoming out." My prayer is that it will not be accompanied by spiritual bottoming. Then, we'll go to Mayo, and the physical aspect smacks us around again. Last time, many of the tests made her quite ill, so we are already praying that she will get through them this time without such nausea and discomfort.
One of the reasons that I have not written sooner is that 4 weeks ago I had surgery on my right shoulder. I had big bone spurs, which were cutting the bursa and rotator cuff. The orthopedic surgeon (who said that I was simply getting old and wearing out!) sawed off ~ 3/4 of an inch of two bones, stripped the bursa, and repaired the rotator cuff. I go to PT (physical therapy, or pain and torture, depending on your perspective) twice a week, and they tell me the full recovery is 6-8 months. Getting old is not for the faint of heart!
We are quite busy right now, as I am sure you all are as well. Caleb made the Wake County Home School all-star varsity high school baseball team. He is a freshman, and he and his best friend Whit, also a freshman, are on this team of juniors and seniors. They play all over the place, all the time, so the Clark Suburban has been rolling up the miles! Their first tourney was in Atlanta, and they have games all over central and eastern NC, as well as another tourney in Marietta, GA and in Pensacola, FL. This has been a terrific experience for him, and we have appreciated the godly men who are coaching the team. This team finished 6th and 3rd in the last two home school World Series, so we'll see what happens this year.
My friend Reid, whose wife died suddenly, seems to be doing well. I think that he is somewhat consumed with the simple details of life, with working, parenting during a time like this, visiting with all the out-of-town family that comes to visit, etc. I appreciate your continued prayers for him and his kids.
I will try to write at least once a month for now, and obviously more as we get into the Mayo deal again in May. Thank you all for your faithful prayers, for the emails and cards, for the surprise visits. One church, which we do not attend, has faithfully sent her at least one card a week since the first diagnosis (Yay Salem!). Thank you all for this tangible expression of love. If there are ways we could pray for you, please let us know. We pray in general for you when we see the notes/etc., but would love to pray more specifically.
Blessings!
Tony
Saturday, February 03, 2007
Prayer for a friend
Dear friends,
Tonight, I have several things to thank God about. I thank Him for choosing me, apart from any merit or worth, to be His adopted child forever. I thank Christ for giving up His own rights, to secure my rights as a joint-heir. I thank Him that He blessed me with His Spirit to teach and to guide me, to comfort me when I hurt.
I thank God that despite the confusion of medical opinions, Dee Dee and I are still like-minded about going with the Mayo Clinic treatment plan of observation. I thank Him for equipping us for this time in life. I thank Him that there are mountain-tops as well as valleys.
I thank Him that Dee Dee had the opportunity to speak at a women's retreat for our church this weekend, and that I am told she was amazing. (No surprise there for me, by the way!) I know her heart's desire was to glorify God, and to edify her sisters; I thank Him that He used her for His purpose. I thank Him that "we glory in tribulations, knowing that tribulation produces perseverance; and perseverance, character; and character, hope. Now hope does not disappoint, because the love of God has been poured out in our hearts by the Holy Spirit who was given to us. Romans 5:3-5) I thank Him that our trials have been with divine purpose. What comfort there is to know that our trials are intentional, and that they have purpose for good; that they are not random or outside the reach of our God. I got into a dispute with a pastor once, in front of a group of folks, because he was telling them that Gabe's illness was not from God, but from Satan. What comfort is there in a God who is not in control of the events of our life? How would that logic have been comforting to Paul, while in jail, or shipwrecked? How would it have comforted us during this illness? No, God ordained this disease, and he knows why. That is enough. This weekend, He used it as part of preparing Dee Dee to speak. Later, He will use it in other ways. I thank Him for that.
Now, I'd like to ask you all to pray for friends of ours. They have been in our small group, and tribulations are more real to them than I can truly fathom. Reid and Stephanie have 3 children, ages 6, 4, and 2. For the past couple of months, Stephanie has had chest pain, but the cardiologist said everything was fine. While driving home from the grocery store last Friday night, 4 days after her 35th birthday, Stephanie had a heart attack and died while talking to Reid on her cell phone. Now, I've had too much occasion to consider my own wife's death this past year (seizure in January, cancer this Fall), and still I really cannot comprehend all the ways to pray for my brother. He is a very solid believer, and I believe that he will persevere, develop character, and have hope. I asked him if I could recruit other prayers through the blog, to which he agreed. Please pray for the comfort of the Spirit, the love of the Father, the fellowship of Christ and His suffering to begin to heal all the hurts. Pray for those sweet little kids. Pray for our little church, and our small group, as we provide care and love. Pray for all the things that I can't even think of right now. Just pray!
Thanks everyone. I'll write again later, and give updates on Reid, as well as our next medical trips to Mayo, etc.
By the way, I'm also thankful to Him for all of you. Ya'll are a blessing.
Tony
Tonight, I have several things to thank God about. I thank Him for choosing me, apart from any merit or worth, to be His adopted child forever. I thank Christ for giving up His own rights, to secure my rights as a joint-heir. I thank Him that He blessed me with His Spirit to teach and to guide me, to comfort me when I hurt.
I thank God that despite the confusion of medical opinions, Dee Dee and I are still like-minded about going with the Mayo Clinic treatment plan of observation. I thank Him for equipping us for this time in life. I thank Him that there are mountain-tops as well as valleys.
I thank Him that Dee Dee had the opportunity to speak at a women's retreat for our church this weekend, and that I am told she was amazing. (No surprise there for me, by the way!) I know her heart's desire was to glorify God, and to edify her sisters; I thank Him that He used her for His purpose. I thank Him that "we glory in tribulations, knowing that tribulation produces perseverance; and perseverance, character; and character, hope. Now hope does not disappoint, because the love of God has been poured out in our hearts by the Holy Spirit who was given to us. Romans 5:3-5) I thank Him that our trials have been with divine purpose. What comfort there is to know that our trials are intentional, and that they have purpose for good; that they are not random or outside the reach of our God. I got into a dispute with a pastor once, in front of a group of folks, because he was telling them that Gabe's illness was not from God, but from Satan. What comfort is there in a God who is not in control of the events of our life? How would that logic have been comforting to Paul, while in jail, or shipwrecked? How would it have comforted us during this illness? No, God ordained this disease, and he knows why. That is enough. This weekend, He used it as part of preparing Dee Dee to speak. Later, He will use it in other ways. I thank Him for that.
Now, I'd like to ask you all to pray for friends of ours. They have been in our small group, and tribulations are more real to them than I can truly fathom. Reid and Stephanie have 3 children, ages 6, 4, and 2. For the past couple of months, Stephanie has had chest pain, but the cardiologist said everything was fine. While driving home from the grocery store last Friday night, 4 days after her 35th birthday, Stephanie had a heart attack and died while talking to Reid on her cell phone. Now, I've had too much occasion to consider my own wife's death this past year (seizure in January, cancer this Fall), and still I really cannot comprehend all the ways to pray for my brother. He is a very solid believer, and I believe that he will persevere, develop character, and have hope. I asked him if I could recruit other prayers through the blog, to which he agreed. Please pray for the comfort of the Spirit, the love of the Father, the fellowship of Christ and His suffering to begin to heal all the hurts. Pray for those sweet little kids. Pray for our little church, and our small group, as we provide care and love. Pray for all the things that I can't even think of right now. Just pray!
Thanks everyone. I'll write again later, and give updates on Reid, as well as our next medical trips to Mayo, etc.
By the way, I'm also thankful to Him for all of you. Ya'll are a blessing.
Tony
Thursday, January 11, 2007
I guess it's not supposed to be easy, huh?
Well, I waited a long time to post again, because I felt that once we got past the business of the holidays, we would make a final decision and I could post that. Sure enough, I had opportunity to talk to the doc at MD Anderson in Houston, Dr. Yao, and he felt that observation would be perfectly acceptable. He is a leading expert on carcinoid, and he likes to use the "What makes you sleep well at night" test. In other words, if you are going to have this everyday sense of anxiety and foreboding, then do the surgery and be done with the cancer. Accept that you will have some (either a lot or a little) consequences, but rest easy because the cancer is gone. On the other hand, if you can live life without that sense of dread, then don't do the surgery.
As we finished up our conversation, he mentioned that he would like me to talk to a doc in NY named Richard Warner, who has treated as many of these as anyone in America. He said that Warner has reported anecdotal success with slowing the progression via an elaborate diet. Yao's point was that if we are going to do observation, we could easily add the diet thing to that.
As you hopefully know, Dee Dee and I are not really fearful folks, and we can sleep quite well at night (well, she can; I never sleep much anyhow) regardless of things like this. We slept well when we thought this might have already spread, and would not have been treatable. So, we decided not to do the surgery, and began making plans for our next trip to Mayo.
However, to satisfy Yao's recommendation, and my wife's love of healthy diet, I called Warner. He listened to her case data, then said, "If she were my patient, I would not try the diet. She has too many tumors, and at least one that is too big for the diet to work. I would remove the biggest tumor with wedge resection, and then do the antrectomy surgery to remove the lower 40% of her stomach. I am concerned that the one larger tumor may be self-feeding already, and not dependant upon the gastrin (hormone) that caused the tumors to form initially." While he agreed that metastasis was unlikely with gastric carcinoid, he said that in his clinic (Sinai Medical Hospital and University) he has seen it spread in 5% of cases. Honest to goodness, I nearly hung up on him as soon as he started talking, 'cause I did not want to hear what he was saying. And I didn't want to report it to Dee Dee either! Sure enough, as I walked in the door that night, she asked if I had gotten to speak with "the NY doctor."
So, the buoyancy that I had seen in Dee Dee for about a week, after we made the (we thought) final decision, has lessened. It has not vanished, but I could physically see her countenance falling as we discussed Warner's thoughts. At the least, it introduces doubt; doubt that will, I am afraid, make her less able to rest confidently in an observation approach. I still suspect that we will opt for no surgery, but we will have a period now where we wrestle with it all again. Maybe we would have had that every time we went for follow-up evaluation? I don't know. We will definitely ask our Mayo doc about these issues.
Please pray for peace. Pray for confidence. I know that God has ordained and decreed how this will turn out; I know that He loves us, and is showing that love by refining us. Pray that he would enable us to boldly live in light of that love. Pray that we/she would not get discouraged. Amazing - 5 hospitals, and at least three opinions.
Thank you all for praying so much, and so long. You all encourage us so much! If a few of you could email Dee Dee, or send a card, it would help put some wind in her sails. With me blogging less, fewer notes come in. That was actually great when we thought we were done working through things; it helped with a feeling that this chapter was closed. Now that it is at least partially re-opened, I know she'd appreciate hearing from you.
By the way, she and I had the opportunity to see the Monet in Normandy exhibit at the NC Museum of Art this afternoon. Amazing! I thank God that He gifted some, that they could put onto canvas a sense of the splendor of His creation. I felt like saying, "Amen" as I looked in wonder at the original works of Monet. I don't know if he felt like he was honoring God as he painted, but I felt like I had worshipped as I enjoyed his work. That is what art should do - reflect God's majesty and glory in creation. That's what we should do in our daily lives, because in some ways, we are the canvas that God paints upon!
God bless ya'll!
Tony
As we finished up our conversation, he mentioned that he would like me to talk to a doc in NY named Richard Warner, who has treated as many of these as anyone in America. He said that Warner has reported anecdotal success with slowing the progression via an elaborate diet. Yao's point was that if we are going to do observation, we could easily add the diet thing to that.
As you hopefully know, Dee Dee and I are not really fearful folks, and we can sleep quite well at night (well, she can; I never sleep much anyhow) regardless of things like this. We slept well when we thought this might have already spread, and would not have been treatable. So, we decided not to do the surgery, and began making plans for our next trip to Mayo.
However, to satisfy Yao's recommendation, and my wife's love of healthy diet, I called Warner. He listened to her case data, then said, "If she were my patient, I would not try the diet. She has too many tumors, and at least one that is too big for the diet to work. I would remove the biggest tumor with wedge resection, and then do the antrectomy surgery to remove the lower 40% of her stomach. I am concerned that the one larger tumor may be self-feeding already, and not dependant upon the gastrin (hormone) that caused the tumors to form initially." While he agreed that metastasis was unlikely with gastric carcinoid, he said that in his clinic (Sinai Medical Hospital and University) he has seen it spread in 5% of cases. Honest to goodness, I nearly hung up on him as soon as he started talking, 'cause I did not want to hear what he was saying. And I didn't want to report it to Dee Dee either! Sure enough, as I walked in the door that night, she asked if I had gotten to speak with "the NY doctor."
So, the buoyancy that I had seen in Dee Dee for about a week, after we made the (we thought) final decision, has lessened. It has not vanished, but I could physically see her countenance falling as we discussed Warner's thoughts. At the least, it introduces doubt; doubt that will, I am afraid, make her less able to rest confidently in an observation approach. I still suspect that we will opt for no surgery, but we will have a period now where we wrestle with it all again. Maybe we would have had that every time we went for follow-up evaluation? I don't know. We will definitely ask our Mayo doc about these issues.
Please pray for peace. Pray for confidence. I know that God has ordained and decreed how this will turn out; I know that He loves us, and is showing that love by refining us. Pray that he would enable us to boldly live in light of that love. Pray that we/she would not get discouraged. Amazing - 5 hospitals, and at least three opinions.
Thank you all for praying so much, and so long. You all encourage us so much! If a few of you could email Dee Dee, or send a card, it would help put some wind in her sails. With me blogging less, fewer notes come in. That was actually great when we thought we were done working through things; it helped with a feeling that this chapter was closed. Now that it is at least partially re-opened, I know she'd appreciate hearing from you.
By the way, she and I had the opportunity to see the Monet in Normandy exhibit at the NC Museum of Art this afternoon. Amazing! I thank God that He gifted some, that they could put onto canvas a sense of the splendor of His creation. I felt like saying, "Amen" as I looked in wonder at the original works of Monet. I don't know if he felt like he was honoring God as he painted, but I felt like I had worshipped as I enjoyed his work. That is what art should do - reflect God's majesty and glory in creation. That's what we should do in our daily lives, because in some ways, we are the canvas that God paints upon!
God bless ya'll!
Tony
Sunday, December 17, 2006
Early Christmas present
Hello All! Merry Christmas about a week early from the Clarks. I know that the posts are a bit more irregular in frequency lately, but that is simply because of two things. One, and I am sure you can all relate, it is BUSY right about now! And two, there's just not much happening medically for Dee Dee. She has mostly fully recovered from the surgery, with the exception being lingering soreness if direct pressure is applied to her left side. We cancelled one follow-up at Duke, just because there seemed no point in it until we decide what to do from a long-term, big decision standpoint.
I have spoken to the folks at Johns-Hopkins, and they affirm that both Duke and Mayo are logically, medically reasonable in their advice. Duke's surgical answer guarantees no cancer but lingering "yuckiness" (a highly sophisticated medical term, by the way); Mayo's means some long-term risk from leaving over twenty tumors in your stomach on purpose, but is reasonably safe with no yuckiness. Johns-Hopkins says that both make sense, and that neither clinic is giving strange advice. I have had one conversation with the doc at MD Anderson in Houston, Dr. James Yao, who is recognized as one of the nation's leading researchers for carcinoid cancer. He also says that sometimes they do the surgery, and sometimes not. He, too, says that both answers are valid. He is debating the need to see Dee Dee, versus just looking at her info and talking to me on the phone. We are leaning more and more toward the Mayo approach of life-long surveillance, probably twice a year for now, once a year down the road. We would do this at Mayo, simply because they are the ones who most earnestly believe it to be appropriate (my decision on that part of the plan).
Now on to the really important stuff. Today was one of the best days in our young church's life. We are less than nine years old, less than 150 people, and just a great community of members. We have this one family, fantastic couple with two girls. The dad, at age 40, became a Christian yesterday! Lots of cheers and tears in Ambassador Presbyterian today, and I am sure for a long time to come. He has loved his wife by attending faithfully with her all these years, as a show of support and respect. She has personified 1 Peter 3, by being a steadfast and godly wife, making the gospel attractive to her husband. PRAISE OUR GOD for His sovereign plan, for His choosing this man to reign in glory, for electing to save another who, like me, did not deserve it. PRAISE OUR GOD that none of us get what we deserve, that none of us can do anything worthy of His approval, but that we can be adopted by the King of all glory to be sons and daughters, full of His grace and receiving His mercy. Let us join with the angels, who are rejoicing for my friend tonight.
Well, there is nothing else that I can write about that warrants inclusion with a sinner being saved, so I'm gonna go to bed now. Take a moment to pray for that friend or family member who you used to pray for regularly, but time has dulled your sense of urgency. You know, that person who seems like a lost cause, that if you really could be honest with yourself, you're not even sure God can save, or wants to save. Time is nothing to our God; and His grace is irresistible. (And all my reformed brothers said, "Amen!")
Love, thanks, and prayers,
Tony
I have spoken to the folks at Johns-Hopkins, and they affirm that both Duke and Mayo are logically, medically reasonable in their advice. Duke's surgical answer guarantees no cancer but lingering "yuckiness" (a highly sophisticated medical term, by the way); Mayo's means some long-term risk from leaving over twenty tumors in your stomach on purpose, but is reasonably safe with no yuckiness. Johns-Hopkins says that both make sense, and that neither clinic is giving strange advice. I have had one conversation with the doc at MD Anderson in Houston, Dr. James Yao, who is recognized as one of the nation's leading researchers for carcinoid cancer. He also says that sometimes they do the surgery, and sometimes not. He, too, says that both answers are valid. He is debating the need to see Dee Dee, versus just looking at her info and talking to me on the phone. We are leaning more and more toward the Mayo approach of life-long surveillance, probably twice a year for now, once a year down the road. We would do this at Mayo, simply because they are the ones who most earnestly believe it to be appropriate (my decision on that part of the plan).
Now on to the really important stuff. Today was one of the best days in our young church's life. We are less than nine years old, less than 150 people, and just a great community of members. We have this one family, fantastic couple with two girls. The dad, at age 40, became a Christian yesterday! Lots of cheers and tears in Ambassador Presbyterian today, and I am sure for a long time to come. He has loved his wife by attending faithfully with her all these years, as a show of support and respect. She has personified 1 Peter 3, by being a steadfast and godly wife, making the gospel attractive to her husband. PRAISE OUR GOD for His sovereign plan, for His choosing this man to reign in glory, for electing to save another who, like me, did not deserve it. PRAISE OUR GOD that none of us get what we deserve, that none of us can do anything worthy of His approval, but that we can be adopted by the King of all glory to be sons and daughters, full of His grace and receiving His mercy. Let us join with the angels, who are rejoicing for my friend tonight.
Well, there is nothing else that I can write about that warrants inclusion with a sinner being saved, so I'm gonna go to bed now. Take a moment to pray for that friend or family member who you used to pray for regularly, but time has dulled your sense of urgency. You know, that person who seems like a lost cause, that if you really could be honest with yourself, you're not even sure God can save, or wants to save. Time is nothing to our God; and His grace is irresistible. (And all my reformed brothers said, "Amen!")
Love, thanks, and prayers,
Tony
Saturday, December 02, 2006
Now that we've calmed down....
Okay, yesterday was no fun. The results were good (the scan showed no new tumors, and the areas of concern were deemed "okay."). For that, we are very thankful. Now to the frustration.
It took a great deal of effort and aggravation to even get yesterday's test scheduled, because Duke insisted that once you have had a doctor do any type of "scope" procedure, no one but that doctor could ever do another scope. So, we had to coordinate her test yesterday with the doc who did her first scan at Duke, and that was tough. Finally, we got that scheduled, nearly three weeks after the initial order for the test (lots of other openings were available sooner, just not with her assigned doc). Then, we had to get the consultation with Dr. Bendell scheduled for after the scan; this was finally set up for Monday, 12/04.
We get to the pre-op area for prepping Dee Dee for the scan, and sure enough, her doc is NOT even in town. Instead, the doc is someone we could have had do the procedure two weeks ago. We maintained a sense of humor, and let it go. The procedure lasted about 50 minutes. Normally, the patient is sedated at the beginning, and wakes up after it is all over. They have a scope down the throat, into the stomach, and this scope is pretty large in diameter. Well, they did not give Dee Dee enough sedation, and she kept waking up during the procedure. She would try to tell them she needed more meds, and they just told her to be still, or to be patient, they were almost done, yada yada yada.
This started shortly after they started the procedure, and it hurt basically the whole time. When they got me to her after it was over, I thought I was going to have to restrain her she was so upset. The doc came and apologized, but that did not erase a pretty bad afternoon. Her throat was very sore the rest of the day yesterday, but today has just been "not normal."
Okay, the venting is over. We are very pleased at the results of the test, even if the test itself was tough. I already emailed the doc at Mayo, and he responded that this is further proof to him that we should not do the stomach surgery. At the very least, we are sure that we will not have any further procedures at Duke. The last 2-3 experiences have been....well, bad. From a scheduling standpoint, from a compassion standpoint, from a pain standpoint, they've just been bad. It seems as if in their desire to practice great medicine, they forgot to practice preat patient care. There's more involved than just the stomach; there is a whole person attached to that stomach! In their zeal to do surgery on her stomach, it feels to us as if they have forgotton to care for the woman. Oops, I think I vented some more!
Thank you all for praying about yesterday. The results were good, and we are grateful for that. Pray that we don't smack anyone at the last appointment on Monday. Also, we are going to at least talk to the folks at MD Anderson (a great cancer clinic in Houston); not sure yet if we are going to go for official consult, but may just talk to them about their philosophical approach to this condition. Pray that we would be wise about that as well, and that the path to doing either of those courses of action would be smooth.
This is Saturday night, so I pray that you have a blessed Lord's Day tomorrow.
It took a great deal of effort and aggravation to even get yesterday's test scheduled, because Duke insisted that once you have had a doctor do any type of "scope" procedure, no one but that doctor could ever do another scope. So, we had to coordinate her test yesterday with the doc who did her first scan at Duke, and that was tough. Finally, we got that scheduled, nearly three weeks after the initial order for the test (lots of other openings were available sooner, just not with her assigned doc). Then, we had to get the consultation with Dr. Bendell scheduled for after the scan; this was finally set up for Monday, 12/04.
We get to the pre-op area for prepping Dee Dee for the scan, and sure enough, her doc is NOT even in town. Instead, the doc is someone we could have had do the procedure two weeks ago. We maintained a sense of humor, and let it go. The procedure lasted about 50 minutes. Normally, the patient is sedated at the beginning, and wakes up after it is all over. They have a scope down the throat, into the stomach, and this scope is pretty large in diameter. Well, they did not give Dee Dee enough sedation, and she kept waking up during the procedure. She would try to tell them she needed more meds, and they just told her to be still, or to be patient, they were almost done, yada yada yada.
This started shortly after they started the procedure, and it hurt basically the whole time. When they got me to her after it was over, I thought I was going to have to restrain her she was so upset. The doc came and apologized, but that did not erase a pretty bad afternoon. Her throat was very sore the rest of the day yesterday, but today has just been "not normal."
Okay, the venting is over. We are very pleased at the results of the test, even if the test itself was tough. I already emailed the doc at Mayo, and he responded that this is further proof to him that we should not do the stomach surgery. At the very least, we are sure that we will not have any further procedures at Duke. The last 2-3 experiences have been....well, bad. From a scheduling standpoint, from a compassion standpoint, from a pain standpoint, they've just been bad. It seems as if in their desire to practice great medicine, they forgot to practice preat patient care. There's more involved than just the stomach; there is a whole person attached to that stomach! In their zeal to do surgery on her stomach, it feels to us as if they have forgotton to care for the woman. Oops, I think I vented some more!
Thank you all for praying about yesterday. The results were good, and we are grateful for that. Pray that we don't smack anyone at the last appointment on Monday. Also, we are going to at least talk to the folks at MD Anderson (a great cancer clinic in Houston); not sure yet if we are going to go for official consult, but may just talk to them about their philosophical approach to this condition. Pray that we would be wise about that as well, and that the path to doing either of those courses of action would be smooth.
This is Saturday night, so I pray that you have a blessed Lord's Day tomorrow.
Immortal, Invisible, God Only Wise
1. Immortal, invisible, God only wise,
In light inaccessible hid from our eyes,
Most blessed, most glorious, the Ancient of Days,
Almighty, victorious, Thy great name we praise.
2. Unresting, unhasting, and silent as light,
Nor wanting, nor wasting, Thou rulest in might;
Thy justice, like mountains, high soaring above
Thy clouds, which are fountains of goodness and love.
3. To all, life Thou givest, to both great and small;
In all life Thou livest, the true life of all;
We blossom and flourish as leaves on the tree,
And wither and perish - but naught changeth Thee.
4. Great Father of glory, pure Father of light,
Thine angels adore Thee, all veiling their sight;
All praise we would render; O help us to see
’Tis only the splendor of light hideth Thee!
Friday, November 24, 2006
Thanks-giving
Gobble Gobble! I finally remembered where our blog was, so I'm here to "post" again. Actually, I've just been slack/busy/waiting for new developments. There is still not much news to report, but I wanted to share a few things we are thankful for, as well as a brief medical update (which is at the end). I hope you all had a great Thanksgiving. How about you folks overseas? Did you do the whole Thanksgiving occasion?
Dee Dee and I have been married for almost twenty years. I am thankful for a godly wife, who loves our Lord, trusts His word, and lives it daily. I am thankful that she is still so good-looking, and that she somehow still thinks I'm okay as well. We are thankful for six great kids. Caleb turns 15 in a couple of days! They are all healthy and well, and we usually want to keep them (grin). We are thankful for a church where God's word is faithfully taught, where the people truly care for one another, and where our gifts are given opportunity to be used. We are thankful for extended family, that despite the normal peaks and valleys of lifelong relationships, are still strong, and in many ways more enjoyable than ever. We are thankful for many friends, who care enough to read stuff like this, to write, to pray, to cook, to love us after the manner of Christ, with grace and mercy. We are thankful for a great practice, with an understanding partner and his wife who care for us as we go through this; and with amazing patients who not only understand when I have to cancel, but many of whom are reading this blog and praying for us as well. We are above all, thankful for a God who is alive and well, active and strong; who is trustworthy; who is faithful to forgive; who never forsakes us even when we turn from him to chase our own idols.
We can just look back and see His providence and protection in so many ways! For example, God used Julius Erving (the basketball player) and J.I. Packer (the theologian) to bring Dee Dee and I together. Amazing! The list of health care issues that we have been through, and delivered from, is surprisingly long. It would take far too long to record them all, and to be honest I started to write some of them, but it just felt wrong. Suffice it to say, we have often been on the receiving end of the medical field!
On to the medicine. Dee Dee has the endoscopic ultrasound scheduled at Duke for this coming Friday, 12/01. Just getting this thing scheduled has been a royal pain, but it is finally almost here. She then has follow-up with Dr. Bendell on Monday the 4th. At that point, there will be no more medical testing or investigating to do; we will have all the information. It will only remain for us to decide. Neither of us wants her to have the stomach surgery, but we will if she needs it. The medical and scientific arguments espoused by both camps (Duke - do surgery; Mayo - no surgery) make remarkable sense.
Mayo says the cancer will never leave her stomach, and will never shorten her life. It will significantly inconvenience her life, but that is all. Duke says that may be true, and the science makes sense, but no one can guarantee that it will not spread. If Dee Dee is that ultra-rare patient (that Mayo says does not exist), then we will regret the decision not to do surgery. Once it has spread to another organ, it is treatable, but not curable. If we do the stomach surgery, then all agree it will be permanently cured. As Dee Dee puts it, Duke is "selling" life insurance.
However, the premium for this insurance is awfully high. Her weight would immediately drop to 90 pounds or less. She may need to be tube-fed for a period of weeks. It could take as much as a year for her weight to recover. It would take about the same length of time for her energy and strength to recover. She would run the risk of significant bone-density problems as a senior citizen because of the extended time of weight loss. It would make the normal living of life for her difficult for a season (homeschooling, teaching, mentoring, etc.). This is all separate from the other issue, the potential for the lifelong digestive problems. So again, we'll do it if she needs it, but man she really needs to need it! I don't think we will do it just out of fear, or from a sense of "What if...."
Certainly, we will not do surgery without another institution concurring with Duke. I have already talked a fair bit with Johns-Hopkins, and they approach this condition from a team format. One doc gathers all the info, then presents the case to an oncology board. They discuss it for an hour or two, then vote. Majority wins. Bottom line, they go about 60% of patients with surgery, and about 40% surveillance; a poor tie-breaker. Sloan-Kettering is very difficult, and will not talk with me on the phone. So, if we decide to go for another opinion, it will be to M.D. Anderson in Houston, TX. This is a great cancer clinic, and is the one our Aunt Jackie received care from during her battle with terminal cancer. We have not decided yet whether to go for another opinion or not. On many of the issues we have faced, I have decided for her/us. This issue is really one that gets to Dee Dee's peace of mind, so I am following her on this one.
Thank you all for persevering in prayer on our behalf. I'll try to write more regularly. Ya'll are great, and I thank God for each of you!
Tony
Oh, also I thank God for turkey and for oyster dressing. And for pecan pie. And naps. He didn't have to let us have any of those, ya know?
Dee Dee and I have been married for almost twenty years. I am thankful for a godly wife, who loves our Lord, trusts His word, and lives it daily. I am thankful that she is still so good-looking, and that she somehow still thinks I'm okay as well. We are thankful for six great kids. Caleb turns 15 in a couple of days! They are all healthy and well, and we usually want to keep them (grin). We are thankful for a church where God's word is faithfully taught, where the people truly care for one another, and where our gifts are given opportunity to be used. We are thankful for extended family, that despite the normal peaks and valleys of lifelong relationships, are still strong, and in many ways more enjoyable than ever. We are thankful for many friends, who care enough to read stuff like this, to write, to pray, to cook, to love us after the manner of Christ, with grace and mercy. We are thankful for a great practice, with an understanding partner and his wife who care for us as we go through this; and with amazing patients who not only understand when I have to cancel, but many of whom are reading this blog and praying for us as well. We are above all, thankful for a God who is alive and well, active and strong; who is trustworthy; who is faithful to forgive; who never forsakes us even when we turn from him to chase our own idols.
We can just look back and see His providence and protection in so many ways! For example, God used Julius Erving (the basketball player) and J.I. Packer (the theologian) to bring Dee Dee and I together. Amazing! The list of health care issues that we have been through, and delivered from, is surprisingly long. It would take far too long to record them all, and to be honest I started to write some of them, but it just felt wrong. Suffice it to say, we have often been on the receiving end of the medical field!
On to the medicine. Dee Dee has the endoscopic ultrasound scheduled at Duke for this coming Friday, 12/01. Just getting this thing scheduled has been a royal pain, but it is finally almost here. She then has follow-up with Dr. Bendell on Monday the 4th. At that point, there will be no more medical testing or investigating to do; we will have all the information. It will only remain for us to decide. Neither of us wants her to have the stomach surgery, but we will if she needs it. The medical and scientific arguments espoused by both camps (Duke - do surgery; Mayo - no surgery) make remarkable sense.
Mayo says the cancer will never leave her stomach, and will never shorten her life. It will significantly inconvenience her life, but that is all. Duke says that may be true, and the science makes sense, but no one can guarantee that it will not spread. If Dee Dee is that ultra-rare patient (that Mayo says does not exist), then we will regret the decision not to do surgery. Once it has spread to another organ, it is treatable, but not curable. If we do the stomach surgery, then all agree it will be permanently cured. As Dee Dee puts it, Duke is "selling" life insurance.
However, the premium for this insurance is awfully high. Her weight would immediately drop to 90 pounds or less. She may need to be tube-fed for a period of weeks. It could take as much as a year for her weight to recover. It would take about the same length of time for her energy and strength to recover. She would run the risk of significant bone-density problems as a senior citizen because of the extended time of weight loss. It would make the normal living of life for her difficult for a season (homeschooling, teaching, mentoring, etc.). This is all separate from the other issue, the potential for the lifelong digestive problems. So again, we'll do it if she needs it, but man she really needs to need it! I don't think we will do it just out of fear, or from a sense of "What if...."
Certainly, we will not do surgery without another institution concurring with Duke. I have already talked a fair bit with Johns-Hopkins, and they approach this condition from a team format. One doc gathers all the info, then presents the case to an oncology board. They discuss it for an hour or two, then vote. Majority wins. Bottom line, they go about 60% of patients with surgery, and about 40% surveillance; a poor tie-breaker. Sloan-Kettering is very difficult, and will not talk with me on the phone. So, if we decide to go for another opinion, it will be to M.D. Anderson in Houston, TX. This is a great cancer clinic, and is the one our Aunt Jackie received care from during her battle with terminal cancer. We have not decided yet whether to go for another opinion or not. On many of the issues we have faced, I have decided for her/us. This issue is really one that gets to Dee Dee's peace of mind, so I am following her on this one.
Thank you all for persevering in prayer on our behalf. I'll try to write more regularly. Ya'll are great, and I thank God for each of you!
Tony
Oh, also I thank God for turkey and for oyster dressing. And for pecan pie. And naps. He didn't have to let us have any of those, ya know?
Thursday, November 09, 2006
Wisdom
Psalm 111:10 - "The fear of the LORD is the beginning of wisdom; all those who
practice it have a good understanding. His praise endures forever!"
It seemed appropriate to start tonight's post with the topic of wisdom, because we sorely need it. Our appointment today with Dr. Bendell went fine, and we liked her well enough. She was very encouraging about the lymph node results, which actually weren't really even lymph in origin. She was encouraging that the long-term prognosis is very good. She was emphatic that the correct course of therapy is to do the stomach surgery to remove the antrum of the stomach.
Ugh.
(Heavy sigh)
So now we come to it, to the deciding point. Mayo says do not, under any circumstances, take out her antrum. In fact, I got an email from the doctor at Mayo last night reiterating that point (Dr. Thompson). The science behind this approach makes wonderful sense to the medical side of both of us. The desire to avoid major surgery, with a 6-9 month recovery, is obviously attractive. The avoidance of the risk of permanent side effects in her digestive system would be great.
At Duke, every doctor, physician's assistant, and nurse practitioner have all said to do the surgery. No exceptions. They have stopped just short of calling Mayo's "Surveillance Therapy" approach ridiculous and irresponsible, but they've come close. (Mayo, on the other hand, essentially called Duke's surgery approach barbaric and uneducated.) The reasoning behind Duke's approach is a bit more philosophical, and unfortunately for us, the folks who ultimately have to make this decision, it also makes absolutely perfect sense. Their reasoning is that she has cancer; it is confined to one location. If we do this surgery, the risk of further complications or spread are permanently eliminated. It is gone, won't come back, completely finished. She never worries about it again.
Also, and this is a part of medicine today, I am sure that everyone at Duke knows that if they recommend the surgery, there is no risk of me coming back 5-10 years from now with a team of lawyers because they failed to act and prevent the early death of my wife. If they go with surveillance, they are convinced that there is some risk of shortened life; why would we chance it, and why would they risk it legally? I just know that is part of their thinking.
Duke agrees that the risk of metastasis is very low, but refuses to say impossible. Mayo says they "think" it is impossible. Dr. Bendell said that if Dee Dee were 72, she would say not to do the surgery. But as young as Dee Dee is, it just doesn't make sense to leave the cancer inside her body when you have a guaranteed way to get it out forever, according to Dr. Bendell. By the way, Bendell is probably in her mid-thirties, female, and fairly thin (not as thin as Dee Dee, but slim). So, she fits the profile for higher risk of post-operative complications that Dee Dee would be at risk for. When asked today what she would do, Dr. Bendell did not hesitate: "I would have the surgery as soon as possible, and be done with it."
We told Dr. Bendell that we would take everything under advisement, but there was no way we were deciding this thing today. We got (more!) bloodwork done today - seven vials worth. They are scheduling the last study they want to do (Mayo agrees), an endoscopy with ultasound of the possible sub-surface tumors in the stomach. Then, we will talk a lot, pray even more, and decide what to do. Obviously, we don't get to simply refuse to decide; that then would be the decision to simply observe. We discussed, briefly, getting yet another opinion (from either Johns Hopkins or from MD Anderson in Houston); but to be honest, starting over at another center made us both feel a bit nauseous. We may revisit that idea later.
By the way, if we go with Mayo's approach, basically for the next several years Dee Dee would get endoscopy 3-4 times a year, CAT scan once a year, PET scan once a year, and octreatide once a year. After that, they would try to spread things out, assuming everything was holding stable. If the lesions grow in size or number, there is increased risk of internal bleeding. If they metastasize, there is risk of shortened life span. Obviously we can come back and do the surgery later, but with any cancer there is a "too late," although evidently that is a low (Duke) to no (Mayo) risk here. If we do the surgery, the cancer risk is gone, but there is between a 5% risk of the permanent digestive problems (per the surgeon, Dr. Pappas), to a 15% risk (per Bendell), to a 50% or greater risk (everyone at Mayo).
So we pray for wisdom. I pray for the courage to be a godly husband and lead my wife even in the scary times and the scary decisions. The Bible says that fear of the Lord is the beginning of wisdom. Proverbs 8:13 - "The fear of the LORD is hatred of evil. Pride and arrogance and the way of evil and perverted speech I hate." So, I pray that we would fear God more, in the correct and proper way. I pray that our reverence and awe and humility before His perfection and holiness would grow. I pray that we would be more convicted of our sinful nature, and of our specific sins, in light of His holiness. This is proper fear of God. And this will lead to greater wisdom. It is a mathematical certainty. Fear of the Lord is the beginning of wisdom.
People ask me if we want to flee, to just get away from this. No! I didn't ask for it, but I have asked God to take it from us. And He has repeatedly said, "NO." His answer, given that He has promised to only do good for us, is good enough. I will not deliberately try to avoid His plan. And by the way, I am not nearly brave enough, or good enough, on my own to stand up to this. It is Christ in me, it is the Holy Spirit comforting me, that enables me to talk about this candidly, to face it daily with sanity and some humor. Our younger kids sing, "My God is so big, so strong and so mighty, there's nothing my God cannot do." And while that does mean that He could take the cancer away, it seems in our case to mean that He can empower us to live as if Scripture is true, even when life circumstances turn scary and sad and hard.
That's really all I/we are doing: living daily as if the Bible is actually true. After all, we're Christians; shouldn't we live this way?
Tony
Proverbs 2:6-7 - "For the LORD gives wisdom; from His mouth come knowledge and understanding; He stores up sound wisdom for the upright; He is a shield to those who walk in integrity"
Proverbs 8:14 - "I have counsel and sound wisdom; I have insight; I have strength."
practice it have a good understanding. His praise endures forever!"
It seemed appropriate to start tonight's post with the topic of wisdom, because we sorely need it. Our appointment today with Dr. Bendell went fine, and we liked her well enough. She was very encouraging about the lymph node results, which actually weren't really even lymph in origin. She was encouraging that the long-term prognosis is very good. She was emphatic that the correct course of therapy is to do the stomach surgery to remove the antrum of the stomach.
Ugh.
(Heavy sigh)
So now we come to it, to the deciding point. Mayo says do not, under any circumstances, take out her antrum. In fact, I got an email from the doctor at Mayo last night reiterating that point (Dr. Thompson). The science behind this approach makes wonderful sense to the medical side of both of us. The desire to avoid major surgery, with a 6-9 month recovery, is obviously attractive. The avoidance of the risk of permanent side effects in her digestive system would be great.
At Duke, every doctor, physician's assistant, and nurse practitioner have all said to do the surgery. No exceptions. They have stopped just short of calling Mayo's "Surveillance Therapy" approach ridiculous and irresponsible, but they've come close. (Mayo, on the other hand, essentially called Duke's surgery approach barbaric and uneducated.) The reasoning behind Duke's approach is a bit more philosophical, and unfortunately for us, the folks who ultimately have to make this decision, it also makes absolutely perfect sense. Their reasoning is that she has cancer; it is confined to one location. If we do this surgery, the risk of further complications or spread are permanently eliminated. It is gone, won't come back, completely finished. She never worries about it again.
Also, and this is a part of medicine today, I am sure that everyone at Duke knows that if they recommend the surgery, there is no risk of me coming back 5-10 years from now with a team of lawyers because they failed to act and prevent the early death of my wife. If they go with surveillance, they are convinced that there is some risk of shortened life; why would we chance it, and why would they risk it legally? I just know that is part of their thinking.
Duke agrees that the risk of metastasis is very low, but refuses to say impossible. Mayo says they "think" it is impossible. Dr. Bendell said that if Dee Dee were 72, she would say not to do the surgery. But as young as Dee Dee is, it just doesn't make sense to leave the cancer inside her body when you have a guaranteed way to get it out forever, according to Dr. Bendell. By the way, Bendell is probably in her mid-thirties, female, and fairly thin (not as thin as Dee Dee, but slim). So, she fits the profile for higher risk of post-operative complications that Dee Dee would be at risk for. When asked today what she would do, Dr. Bendell did not hesitate: "I would have the surgery as soon as possible, and be done with it."
We told Dr. Bendell that we would take everything under advisement, but there was no way we were deciding this thing today. We got (more!) bloodwork done today - seven vials worth. They are scheduling the last study they want to do (Mayo agrees), an endoscopy with ultasound of the possible sub-surface tumors in the stomach. Then, we will talk a lot, pray even more, and decide what to do. Obviously, we don't get to simply refuse to decide; that then would be the decision to simply observe. We discussed, briefly, getting yet another opinion (from either Johns Hopkins or from MD Anderson in Houston); but to be honest, starting over at another center made us both feel a bit nauseous. We may revisit that idea later.
By the way, if we go with Mayo's approach, basically for the next several years Dee Dee would get endoscopy 3-4 times a year, CAT scan once a year, PET scan once a year, and octreatide once a year. After that, they would try to spread things out, assuming everything was holding stable. If the lesions grow in size or number, there is increased risk of internal bleeding. If they metastasize, there is risk of shortened life span. Obviously we can come back and do the surgery later, but with any cancer there is a "too late," although evidently that is a low (Duke) to no (Mayo) risk here. If we do the surgery, the cancer risk is gone, but there is between a 5% risk of the permanent digestive problems (per the surgeon, Dr. Pappas), to a 15% risk (per Bendell), to a 50% or greater risk (everyone at Mayo).
So we pray for wisdom. I pray for the courage to be a godly husband and lead my wife even in the scary times and the scary decisions. The Bible says that fear of the Lord is the beginning of wisdom. Proverbs 8:13 - "The fear of the LORD is hatred of evil. Pride and arrogance and the way of evil and perverted speech I hate." So, I pray that we would fear God more, in the correct and proper way. I pray that our reverence and awe and humility before His perfection and holiness would grow. I pray that we would be more convicted of our sinful nature, and of our specific sins, in light of His holiness. This is proper fear of God. And this will lead to greater wisdom. It is a mathematical certainty. Fear of the Lord is the beginning of wisdom.
People ask me if we want to flee, to just get away from this. No! I didn't ask for it, but I have asked God to take it from us. And He has repeatedly said, "NO." His answer, given that He has promised to only do good for us, is good enough. I will not deliberately try to avoid His plan. And by the way, I am not nearly brave enough, or good enough, on my own to stand up to this. It is Christ in me, it is the Holy Spirit comforting me, that enables me to talk about this candidly, to face it daily with sanity and some humor. Our younger kids sing, "My God is so big, so strong and so mighty, there's nothing my God cannot do." And while that does mean that He could take the cancer away, it seems in our case to mean that He can empower us to live as if Scripture is true, even when life circumstances turn scary and sad and hard.
That's really all I/we are doing: living daily as if the Bible is actually true. After all, we're Christians; shouldn't we live this way?
Tony
Proverbs 2:6-7 - "For the LORD gives wisdom; from His mouth come knowledge and understanding; He stores up sound wisdom for the upright; He is a shield to those who walk in integrity"
Proverbs 8:14 - "I have counsel and sound wisdom; I have insight; I have strength."
Wednesday, November 08, 2006
Final report on the "Lymph"
We had our appointment today with the thoracic folks at Duke. Basically, all GOOD NEWS! They said that she is healing as expected, and that her incisions are great. The pain, and more recent addition of significant burning, are normal and will pass over the next two-three weeks. The doctor said that you can tell a great deal about a person's overall health by how they do while under general anesthesia, and that Dee Dee is "the very picture of excellent cardiovascular health." One of the anesthesia docs commented that he needed to get on "whatever workout program this lady is on." That's my bride!
And best of all, the lymph was actually more of a blood vessel problem, totally benign, unrelated to the stomach in any sense of the word. It was large enough that they are glad to have it out, but suspect that it had been there for years. Amazing! The thymus gland was partially involved, and they removed part of it, but that, too, is no big deal. The thymus is hugely critical in developing immunities during the first decade of life, but by age twenty it begins to atrophy, and by now is mostly inert tissue. It has done its job, so it basically goes away over time. Again, we are fearfully and wonderfully made. If Darwin himself could see the human body with the level of medical and scientific knowledge that we have today, he would scoff at his own theory.
Thanks for continued praying, and meals, and notes and cards. She has never been a big fan of spending time on the phone, but she's even up for more calls and visits now. Thanks for your continued efforts to encourage her, and me, and all us Clarks!
Tony
And best of all, the lymph was actually more of a blood vessel problem, totally benign, unrelated to the stomach in any sense of the word. It was large enough that they are glad to have it out, but suspect that it had been there for years. Amazing! The thymus gland was partially involved, and they removed part of it, but that, too, is no big deal. The thymus is hugely critical in developing immunities during the first decade of life, but by age twenty it begins to atrophy, and by now is mostly inert tissue. It has done its job, so it basically goes away over time. Again, we are fearfully and wonderfully made. If Darwin himself could see the human body with the level of medical and scientific knowledge that we have today, he would scoff at his own theory.
Thanks for continued praying, and meals, and notes and cards. She has never been a big fan of spending time on the phone, but she's even up for more calls and visits now. Thanks for your continued efforts to encourage her, and me, and all us Clarks!
Tony
Monday, November 06, 2006
One week post-op
Greetings! I know it has been a while since my last post, but that's simply because not much has changed. Basically, this has been a much more painful and slow surgery to recover from than we had anticipated, but she is getting better. Yesterday, for example, she had to leave church early because it just hurt too much to stay.
However, she is clearly better now than she was 2-3 days ago. That is how we have realized that we must think of this process: looking at several days for progress, not daily progress. This is not easy for two sinfully self-sufficient, strong "type A's" to readily accept. We are sort of wired to look at the new morning and compare it to last night. Or, for me to get home from work and want to know how much better she is than that morning. So, it seems, God intends to teach us patience through this process, among other things.
When Gabe was sick, exactly ten years ago, I remember saying that there are times that God shapes his children gently, with very fine sandpaper. There are other times that he is a sculptor, using chisels to knock off great pieces of sin. This is a new time of sculpting for us, and self-sufficiency and patience are two of the chunks getting leveled! Maybe if we'd learned those lessons well enough last time....
Now, I'm not saying that God has sent Dee Dee's cancer purely as discipline. He may very well have sent it simply to refine us, to strengthen our faith. However, His word is clear that he will also correct His children when they are in sinful patterns that they seem unaware of, or unwilling to repent of. Therefore, we would be remiss not to do some introspective soul-searching any time difficulties are sent our way. All opportunities to learn more of our sin, of our need for a savior, should be welcomed and vigorously pursued. This is one of those times, when we are driven back to Christ. We should be thankful when God, in His love and grace, works to get us back to the cross! This is the concept we see in so many Psalms, where He searches our hearts (Psalms 4:4, 7:9, 139:1, 139:23).
Some good news: the preliminary pathology results for the mass removed last week are that it is benign, and unrelated to the stomach cancer. We should get final results tomorrow at her appointment at Duke. So, the surgery was able to be done locally (not at Mayo); in the least invasive manner possible (no broken ribs or sternum sawed in half); with what appears to be the best pathology result possible. Praise God! The pain can wear your body down, but our hearts rejoice in the goodness of God.
Our upcoming schedule looks like surgery follow-up on Wednesday; and first official appointment with the medical GI oncologist at Duke on Thursday. She, we assume, will then schedule the remaining test to look at the sub-surface lesions in the stomach that were seen at Mayo, and then we will decide on further treatment.
I was thinking, how things that you would not really expect to minister to you during troubling times, actually end up being part of the key ways you are blessed. Now, I know you all will laugh at this, and say to yourselves that every Clark male would say the same thing, but food really has been that for us. Many have brought food, both for lunches and dinners. Thank you all! We know some very good cooks! It has been a blessing not to need to figure out menus, try to get them prepared, or just constantly go for take out. Thank you.
Another unexpected blessing: When Gabe was ill, one of our dear friends really ministered to our hearts regularly. Doug and Susie then moved to Oklahoma (proving the depravity of man and that all sin and fall short!), and we have missed them ever since. As we have gone through this, I have missed Doug. I have missed his laugh, his genuine affection, and his ability to quickly connect to my own emotional state. Sunday afternoon, I got a call from this dear man telling me that he would be in my house in about 2 hours. What a treat! He was just in for a brief trip, knew of our situation, and came to spend a few minutes with us. It reminded me of .... the last time I approached this level of hurt/pain/ fear/helplessness, and how God used this brother to minister comfort and peace. In Is. 61, He promises to bring beauty from ashes; isn't it great when He let's us be a part of that process?
Tony
However, she is clearly better now than she was 2-3 days ago. That is how we have realized that we must think of this process: looking at several days for progress, not daily progress. This is not easy for two sinfully self-sufficient, strong "type A's" to readily accept. We are sort of wired to look at the new morning and compare it to last night. Or, for me to get home from work and want to know how much better she is than that morning. So, it seems, God intends to teach us patience through this process, among other things.
When Gabe was sick, exactly ten years ago, I remember saying that there are times that God shapes his children gently, with very fine sandpaper. There are other times that he is a sculptor, using chisels to knock off great pieces of sin. This is a new time of sculpting for us, and self-sufficiency and patience are two of the chunks getting leveled! Maybe if we'd learned those lessons well enough last time....
Now, I'm not saying that God has sent Dee Dee's cancer purely as discipline. He may very well have sent it simply to refine us, to strengthen our faith. However, His word is clear that he will also correct His children when they are in sinful patterns that they seem unaware of, or unwilling to repent of. Therefore, we would be remiss not to do some introspective soul-searching any time difficulties are sent our way. All opportunities to learn more of our sin, of our need for a savior, should be welcomed and vigorously pursued. This is one of those times, when we are driven back to Christ. We should be thankful when God, in His love and grace, works to get us back to the cross! This is the concept we see in so many Psalms, where He searches our hearts (Psalms 4:4, 7:9, 139:1, 139:23).
Some good news: the preliminary pathology results for the mass removed last week are that it is benign, and unrelated to the stomach cancer. We should get final results tomorrow at her appointment at Duke. So, the surgery was able to be done locally (not at Mayo); in the least invasive manner possible (no broken ribs or sternum sawed in half); with what appears to be the best pathology result possible. Praise God! The pain can wear your body down, but our hearts rejoice in the goodness of God.
Our upcoming schedule looks like surgery follow-up on Wednesday; and first official appointment with the medical GI oncologist at Duke on Thursday. She, we assume, will then schedule the remaining test to look at the sub-surface lesions in the stomach that were seen at Mayo, and then we will decide on further treatment.
I was thinking, how things that you would not really expect to minister to you during troubling times, actually end up being part of the key ways you are blessed. Now, I know you all will laugh at this, and say to yourselves that every Clark male would say the same thing, but food really has been that for us. Many have brought food, both for lunches and dinners. Thank you all! We know some very good cooks! It has been a blessing not to need to figure out menus, try to get them prepared, or just constantly go for take out. Thank you.
Another unexpected blessing: When Gabe was ill, one of our dear friends really ministered to our hearts regularly. Doug and Susie then moved to Oklahoma (proving the depravity of man and that all sin and fall short!), and we have missed them ever since. As we have gone through this, I have missed Doug. I have missed his laugh, his genuine affection, and his ability to quickly connect to my own emotional state. Sunday afternoon, I got a call from this dear man telling me that he would be in my house in about 2 hours. What a treat! He was just in for a brief trip, knew of our situation, and came to spend a few minutes with us. It reminded me of .... the last time I approached this level of hurt/pain/ fear/helplessness, and how God used this brother to minister comfort and peace. In Is. 61, He promises to bring beauty from ashes; isn't it great when He let's us be a part of that process?
Tony
Wednesday, November 01, 2006
Praising Him for another day done
Don't you find, when you are sick or hurting, that you almost count the days? You know, for example, that the flu doesn't last forever. So, you count the hours, knowing that relief comes with time. In school they taught us that one of the most effective treatments in all of medicine is "tincture of time." Time alone will cure a lot of ills!
So today, no big events, unless you count a short walk down the street. Unless you count her fever breaking so that she did not have to be readmitted (this was a strong possibility last night at about 9-10 p.m. The magic number for re-admittance was 101.5; she got to 101.2). Unless you count no real nausea for the first time in 48 hours. Well, I'm counting all those things!!!
Yes, time is starting to mend Dee Dee's body from the insult of surgery. She is beginning to feel less sharp pain, and now has this more steady pain, less severe than yesterday. Yesterday the oxycodone narcotic pain meds didn't do a lot of good; today they are helping. These are great things!
She told me yesterday that if the full thoracotomy surgery, as originally proposed as likely to be necessary, actually did hurt a lot worse than this VATS surgery, then she would have opted to leave the tumor in there. My wife is pretty stoic, so I knew she was in a deep hole. Today she can see out of the hole. Thanks for praying.
Tony
So today, no big events, unless you count a short walk down the street. Unless you count her fever breaking so that she did not have to be readmitted (this was a strong possibility last night at about 9-10 p.m. The magic number for re-admittance was 101.5; she got to 101.2). Unless you count no real nausea for the first time in 48 hours. Well, I'm counting all those things!!!
Yes, time is starting to mend Dee Dee's body from the insult of surgery. She is beginning to feel less sharp pain, and now has this more steady pain, less severe than yesterday. Yesterday the oxycodone narcotic pain meds didn't do a lot of good; today they are helping. These are great things!
She told me yesterday that if the full thoracotomy surgery, as originally proposed as likely to be necessary, actually did hurt a lot worse than this VATS surgery, then she would have opted to leave the tumor in there. My wife is pretty stoic, so I knew she was in a deep hole. Today she can see out of the hole. Thanks for praying.
Tony
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