Hello all! Not as significant a day today, but some new info. Dee Dee's blood work came back and showed incredibly high blood levels of gastrin. The normal range is below 150; hers was over 2200. Believe it or not, that is actually a good thing. The theory here is that patients with pernicious anemia (which as I mentioned she has had for at least ten years) do not have the ability to regulate their production of gastrin, which is a hormone produced in the lower stomach (antrum). Gastrin causes the production of gastric acid, which aids in digestion. Gastrin is inhibited by acid, and pernicious anemia patients do not have the proper acid amounts, so gastrin goes without inhibition. The theory continues that the elevated gastrin actually causes the formation of the carcinoid tumors. Carcinoids, by the way, also produce hormones of their own, so it is all kind of cyclical. So, if you remove the initiator of the problem, the gastrin-producing antrum of the stomach, the risk of recurrence is almost nil.
Also, I wanted to give ya'll a link provided to me by the editor of "Oncology Today," one of the leading cancer periodicals. She has been very good about advice, who to see, etc. (So maybe say a prayer of thanks for Dr. Holly Atkinson, and also pray for her as well.) This site has more info than you can really digest (sorry about the pun), but it is written in large part for non-physicians. http://www.carcinoid.org/
The doctors at Duke are Theodore Pappas and Michael Morse; at Mayo Clinic will be Joseph Rubin and Geoff Thompson. Please pray that they would be wise, understanding, and that they would all be of like mind.
We have our first appointment at Duke, with Dr. Pappas, on Monday 10/2/2006 at 11:30. Hopefully he will quickly order the remaining scan (Octreotide scan), as well as whatever needs to be done to definitively settle the lymph node question. Then we will probably have a conference visit with he and Dr. Morse, the primary oncologist (Pappas is the surgeon). I will go ahead and schedule our time in Minnesota for the Mayo clinic as soon as we meet with Pappas next week.
We continue to be grateful, and truly blessed, by the outpouring of cards and notes. It is a blessing to be so wonderfully bathed in prayer. It was exactly ten years ago that we were in the hospital with Gabe, then 4 months old, as the physicians told us he was going to die. The body of Christ so comforted us, and so many people prayed, that for the first time in my life I actually believed in the reality of prayer. It was a humbling and in retrospect sweet time of God teaching us amazing things. A decade later, we find ourselves in a familiar health-related valley, yet we are once again beginning to sense the comforting work of the Spirit as you all pray.
What I often did not realize then, but am keenly aware of now, is that not only are God's people praying, Christ Himself is praying on our behalf (Hebrews 7:25 "Consequently, he is able to save to the uttermost those who draw near to God through him, since he always lives to make intercession for them," and thanks to Scott T. for the verse reminder). The Holy Spirit is interceding for us as well (Romans 8:26 "Likewise the Spirit helps us in our weakness. For we do not know what to pray for as we ought, but the Spirit himself intercedes for us with groanings too deep for words.") So, there's a lot of praying for the Clarks, and we are thankful!
God is good, and He loves to bless His children.
Tony
Wednesday, September 27, 2006
Tuesday, September 26, 2006
Lab results
Okay, just as I was walking out the door for a meeting, our primary gastro-doc called with results. Remember, the tests done so far give less than 100% proof of anything, but they are very likely correct (90%? I am not sure just how accurate, but very very good).
Basically, they are the second-best result we could have gotten. The best would have been no evidence of any carcinoid ANYWHERE else. However, there is one lymph node in the left chest that is large, and probably has carcinoid . This is evidently not surprising (according to the folks at Duke), and does not necessarily carry a big negative impact on overall prognosis. We will have to have it biopsied, and maybe it gets removed; don't know yet.
BUT, the liver is clear! Praise God! The small intestine, large intestine, lungs, and all other possible locations show no evidence of tumor growth at this time. Hallelujah! We still have one other highly specialized scan to go, and it could refute these results, but that is not likely.
This was a tough day. Every phone call was brutal, as heart rates raced, then it was just the invisible fence guy (for example). We rejoice that this stage is over, that the overall outlook just got a lot better, and we can begin to more accurately know what we are up against.
Thank you all for your prayers and emails and notes. They have been a blessing. Please, feel free to comment on the blog postings, but also email Dee Dee directly (lotofhats@nc.rr.com). She will not read the blog as often as she checks emails.
Thank you friends!
Tony
Basically, they are the second-best result we could have gotten. The best would have been no evidence of any carcinoid ANYWHERE else. However, there is one lymph node in the left chest that is large, and probably has carcinoid . This is evidently not surprising (according to the folks at Duke), and does not necessarily carry a big negative impact on overall prognosis. We will have to have it biopsied, and maybe it gets removed; don't know yet.
BUT, the liver is clear! Praise God! The small intestine, large intestine, lungs, and all other possible locations show no evidence of tumor growth at this time. Hallelujah! We still have one other highly specialized scan to go, and it could refute these results, but that is not likely.
This was a tough day. Every phone call was brutal, as heart rates raced, then it was just the invisible fence guy (for example). We rejoice that this stage is over, that the overall outlook just got a lot better, and we can begin to more accurately know what we are up against.
Thank you all for your prayers and emails and notes. They have been a blessing. Please, feel free to comment on the blog postings, but also email Dee Dee directly (lotofhats@nc.rr.com). She will not read the blog as often as she checks emails.
Thank you friends!
Tony
Quick thought
First, we have no news as yet. We are eager to hear from yesterday's tests, but nothing yet. Pray.
I had a thought, as I have watched the amazing way in which Dee Dee has handled this whole...thing...with grace and courage and faith in a good God: I shouldn't be surprised. I should not be surprised because my wife is an amazing lady. But more to the point, I shouldn't be amazed because God has had this time in our lives in His plan for all eternity. He knew we would be here, now, and he loves us too much to let us get here unprepared. For all her life, for all my life, He has been pouring into us all the things and people and events to prepare us to meet this day. The way in which we handle it is merely a reflection of His goodness in preparing His children as only a perfect and loving Father could.
So, if you read my stuff, or talk to one of us, and think that we are brave, or admirable, don't. Take that opportunity to thank God for loving us enough to prepare us for the times.
Tony
I had a thought, as I have watched the amazing way in which Dee Dee has handled this whole...thing...with grace and courage and faith in a good God: I shouldn't be surprised. I should not be surprised because my wife is an amazing lady. But more to the point, I shouldn't be amazed because God has had this time in our lives in His plan for all eternity. He knew we would be here, now, and he loves us too much to let us get here unprepared. For all her life, for all my life, He has been pouring into us all the things and people and events to prepare us to meet this day. The way in which we handle it is merely a reflection of His goodness in preparing His children as only a perfect and loving Father could.
So, if you read my stuff, or talk to one of us, and think that we are brave, or admirable, don't. Take that opportunity to thank God for loving us enough to prepare us for the times.
Tony
Monday, September 25, 2006
I am going to copy the original letter that we sent to our church to let them know about this. Many of you already have received this, so feel free to skip this second reading.
Late last week (9/21) we discovered that Dee Dee has a form of stomach cancer, known as carcinoids. This is a relatively rare cancer, and it is somewhere between benign and malignant. It does not spread in the traditional sense of “malignant,” where cells will seed themselves into new areas via the lymphs or blood system. However, it can spread by simple growth into adjacent tissue. The cancer was discovered during a routine procedure, while they were looking for reasons that her anemia (present for 10+ years) has recently worsened. She has no real symptoms at this time, and so we are actually thankful that God worsened her anemia; otherwise this would have gone undetected for years.
The only place we know for certain that the tumors exist are in the part of the stomach nearest the esophagus. There are 10-12 tumors total, all fairly small. At this point our next efforts are to determine if the tumors have already spread elsewhere. We started Monday 9/25 with the first battery of testing to look for metastasis. The outlook really comes down to a fairly simple equation. If the cancer is confined to the stomach, her prognosis is very good. The goal in that scenario is total cure, via surgery to remove the portion of her stomach with the tumors. If, however, it has spread, the outlook becomes bleaker. The degree to which the prognosis worsens depends on the exact location and size of the spread. The worst scenario would be spread to the liver.
We are thankful for a number of things. There are several factors in our favor (other than the fact that God is indeed good, and enjoys giving good gifts to His children). I was able to talk to the head of gastro-oncology (digestive system cancer) at the Mayo clinic for about 30 minutes Friday. He was very encouraging. He said that there are several things in her favor, from the standpoint of it probably being isolated to the stomach. These include her youth, her overall excellent health, and even the anemia. All of these things are encouraging, and I am thankful that this gentleman took time out of his amazingly busy day to talk to a scared stranger. He said that in his opinion, having never seen her or any of her tests, that he feels her prognosis is excellent, because he believes that the cancer is only in the stomach. “Now, you will have many difficult decisions to make, and dark days between now and that excellent outcome, but I will be surprised if there is anything worse for your wife,” is how he closed out our talk.
We count you all among the blessings God has placed in our lives at this difficult time. We truly cherish your friendship, your love and grace, and we covet your prayers. I know that you all will pray, and that is really all we need at this time. Our need for physical things, where you can be Christ’s hands and feet to us, is coming. For now, we are trying hard to keep life as normal as possible for the kids, so we ask that things like meals and babysitting, even visits, wait until we are in greater need of those specific things. In particular, Dee Dee is not up for a lot of calls, visits, etc., just yet. She does enjoy notes and emails, so please encourage her that way.
We are both wrestling with this thing, emotionally. Thankfully, I can honestly say that I am proud of the way my wife is wrestling spiritually. She is confident in her Father’s love and goodness, and knows that all things are for His glory. I thank God for the spiritual grace he has poured into Dee Dee. She has continued to look for ways to nurture the very people trying to bless her. We are thankful for Warren’s summer sermon series on the Lord’s Prayer, as we now pray, “Let thy will be done.” There is always a period of time where your head knowledge and your heart emotions are disconnected; where you know that He is sovereign and has decreed all things, and that there is nothing outside His plan for your good, but your heart doesn’t follow the head. Well, we are moving toward the heart believing what the head knows. There will be times that we forget, and we’d ask you to pray that we quickly remember.
The other things to pray for are our strength, our courage, and our faith. Pray for our relationship with each other. Pray that we know how to parent our children well through this time. Pray that all the learning, from all the studies and books and sermons, would yield a harvest of righteous fruit in us now. Pray that the tumors are indeed 100% confined to Dee Dee’s stomach, and further that we are able to prove this very soon. The unknown is….difficult. Pray for our doctors, and for the doctors and surgeons that we will be seeing but haven’t even met yet.
We have difficult decisions to make, so pray for our wisdom. Pray that this would take a marriage that was already sweet, and good, and be used by God to make it amazingly sweeter and better. Pray also for our kids, as they come to grips with this as well. Our youngest two know Mommy is sick, but seem fairly unaware of the possible repercussions, and that is fine with us. Their smiles and sense of “life is normal” is refreshing for us right now. Gabe and Anna Grace are concerned, but are not sure how much to be worried. I pray that they don’t internalize their concern, confusion, or fear. Caleb and Samara are hurting, but are trying to be strong in front of Dee Dee. I am quite proud of their protectiveness of her, but pray that they don’t feel like they have to be strong towers for us. That is not their calling in this; Christ is our strong tower, and theirs.
A friend reminded me of Hebrews 7:25 – Christ lives to make intercession for us. He longs for the times that he, our High Priest, can plead on our behalf. How amazing! How comforting! How like God, to plan the events of our life, and to intimately take part in that same plan. Pray for us as we experience that intimate relationship in a way that we would not have chosen, but which he has. His way is always the right and best way, and for that we are thankful.
Thank you all for your love,
Tony
We should find out the results of today's chest x-ray, blood work, and CAT scans on Tuesday or Wednesday of this week. We have an appointment with Dr. Theodore Pappas at Duke next Monday. He would be the surgeon for her case. Before that happens, we plan to go to the Mayo Clinic for second opinions and confirmation about our course of treatment. I have already spoken with the doctor up at Mayo (in Minnesota), Dr. Joseph Rubin, about Dee Dee's case, and he was very helpful and encouraging.
Our prayer for the next 48 hours is that all tests show zero spread of the cancer to any other organ or location. The prognosis is good as long as it stayed in the stomach. We especially do not want it in the liver or her lungs.
Thank you all for your prayers. Also, thanks for the emails and the cards. They really seem to pick Dee Dee up.
Tony
Late last week (9/21) we discovered that Dee Dee has a form of stomach cancer, known as carcinoids. This is a relatively rare cancer, and it is somewhere between benign and malignant. It does not spread in the traditional sense of “malignant,” where cells will seed themselves into new areas via the lymphs or blood system. However, it can spread by simple growth into adjacent tissue. The cancer was discovered during a routine procedure, while they were looking for reasons that her anemia (present for 10+ years) has recently worsened. She has no real symptoms at this time, and so we are actually thankful that God worsened her anemia; otherwise this would have gone undetected for years.
The only place we know for certain that the tumors exist are in the part of the stomach nearest the esophagus. There are 10-12 tumors total, all fairly small. At this point our next efforts are to determine if the tumors have already spread elsewhere. We started Monday 9/25 with the first battery of testing to look for metastasis. The outlook really comes down to a fairly simple equation. If the cancer is confined to the stomach, her prognosis is very good. The goal in that scenario is total cure, via surgery to remove the portion of her stomach with the tumors. If, however, it has spread, the outlook becomes bleaker. The degree to which the prognosis worsens depends on the exact location and size of the spread. The worst scenario would be spread to the liver.
We are thankful for a number of things. There are several factors in our favor (other than the fact that God is indeed good, and enjoys giving good gifts to His children). I was able to talk to the head of gastro-oncology (digestive system cancer) at the Mayo clinic for about 30 minutes Friday. He was very encouraging. He said that there are several things in her favor, from the standpoint of it probably being isolated to the stomach. These include her youth, her overall excellent health, and even the anemia. All of these things are encouraging, and I am thankful that this gentleman took time out of his amazingly busy day to talk to a scared stranger. He said that in his opinion, having never seen her or any of her tests, that he feels her prognosis is excellent, because he believes that the cancer is only in the stomach. “Now, you will have many difficult decisions to make, and dark days between now and that excellent outcome, but I will be surprised if there is anything worse for your wife,” is how he closed out our talk.
We count you all among the blessings God has placed in our lives at this difficult time. We truly cherish your friendship, your love and grace, and we covet your prayers. I know that you all will pray, and that is really all we need at this time. Our need for physical things, where you can be Christ’s hands and feet to us, is coming. For now, we are trying hard to keep life as normal as possible for the kids, so we ask that things like meals and babysitting, even visits, wait until we are in greater need of those specific things. In particular, Dee Dee is not up for a lot of calls, visits, etc., just yet. She does enjoy notes and emails, so please encourage her that way.
We are both wrestling with this thing, emotionally. Thankfully, I can honestly say that I am proud of the way my wife is wrestling spiritually. She is confident in her Father’s love and goodness, and knows that all things are for His glory. I thank God for the spiritual grace he has poured into Dee Dee. She has continued to look for ways to nurture the very people trying to bless her. We are thankful for Warren’s summer sermon series on the Lord’s Prayer, as we now pray, “Let thy will be done.” There is always a period of time where your head knowledge and your heart emotions are disconnected; where you know that He is sovereign and has decreed all things, and that there is nothing outside His plan for your good, but your heart doesn’t follow the head. Well, we are moving toward the heart believing what the head knows. There will be times that we forget, and we’d ask you to pray that we quickly remember.
The other things to pray for are our strength, our courage, and our faith. Pray for our relationship with each other. Pray that we know how to parent our children well through this time. Pray that all the learning, from all the studies and books and sermons, would yield a harvest of righteous fruit in us now. Pray that the tumors are indeed 100% confined to Dee Dee’s stomach, and further that we are able to prove this very soon. The unknown is….difficult. Pray for our doctors, and for the doctors and surgeons that we will be seeing but haven’t even met yet.
We have difficult decisions to make, so pray for our wisdom. Pray that this would take a marriage that was already sweet, and good, and be used by God to make it amazingly sweeter and better. Pray also for our kids, as they come to grips with this as well. Our youngest two know Mommy is sick, but seem fairly unaware of the possible repercussions, and that is fine with us. Their smiles and sense of “life is normal” is refreshing for us right now. Gabe and Anna Grace are concerned, but are not sure how much to be worried. I pray that they don’t internalize their concern, confusion, or fear. Caleb and Samara are hurting, but are trying to be strong in front of Dee Dee. I am quite proud of their protectiveness of her, but pray that they don’t feel like they have to be strong towers for us. That is not their calling in this; Christ is our strong tower, and theirs.
A friend reminded me of Hebrews 7:25 – Christ lives to make intercession for us. He longs for the times that he, our High Priest, can plead on our behalf. How amazing! How comforting! How like God, to plan the events of our life, and to intimately take part in that same plan. Pray for us as we experience that intimate relationship in a way that we would not have chosen, but which he has. His way is always the right and best way, and for that we are thankful.
Thank you all for your love,
Tony
We should find out the results of today's chest x-ray, blood work, and CAT scans on Tuesday or Wednesday of this week. We have an appointment with Dr. Theodore Pappas at Duke next Monday. He would be the surgeon for her case. Before that happens, we plan to go to the Mayo Clinic for second opinions and confirmation about our course of treatment. I have already spoken with the doctor up at Mayo (in Minnesota), Dr. Joseph Rubin, about Dee Dee's case, and he was very helpful and encouraging.
Our prayer for the next 48 hours is that all tests show zero spread of the cancer to any other organ or location. The prognosis is good as long as it stayed in the stomach. We especially do not want it in the liver or her lungs.
Thank you all for your prayers. Also, thanks for the emails and the cards. They really seem to pick Dee Dee up.
Tony
Getting started

Well, I guess most of you know why I decided to start this blog. With the recent diagnosis of carcinoid cancer in Dee Dee's stomach, I needed a way to update all the folks who love us, and are praying for us, and who we love in return. This isn't going to be fancy, and I've been known to ramble, it is just to give a place where folks can get news, and learn of specific ways to pray for Dee Dee, for me, and for our kids. Thanks.
Tony
Subscribe to:
Posts (Atom)