We are in Minneapolis, just waiting until time to head for the airport now. We just had a long talk about the whole trip, trying to summarize things while they are still fresh, making sure we are together in our thoughts and feelings.
Sadly, we are coming home with more questions than we had before. The two centers are absolutely of different opinions on the stomach; Duke still wants to do the stomach surgery, and Mayo still says the stomach is safe. We don't know what the lymph node is. There is one radiology report that suggests that there is a second, smaller lesion about 6 inches lower than the big lymph, but we are not sure if that is just a poorly worded reference to the big lesion, or actually is a second lesion. It comes from the PET scan, but does not show up on the xray or CT; the big one shows on CT and octreatide, but not on PET.
The last time we talked to Duke, they still want to try to biopsy the node. The folks up here feel that would be a waste of time, and putting Dee Dee at risks that she does not need to undergo. Duke's point is that a biopsy carries less risk than surgery, less pain, and might allow her to skip the surgery altogether. Mayo's point is that the thing is too big to leave in there, no matter what it is, so skip the biopsy with its risks, and just get it out. All agree that it is most likely cancer, but until we get it under a microscope we will not know what type.
(By the way, as I write about my wife and cancer and surgery and risks, I still feel a lot like getting sick. It is a very schizophrenic feeling, letting the medical part of my brain relay facts, while all other parts of me want to scream and run around in circles!)
Emotionally, Dee Dee is very low. She is feeling some sense of failure and guilt because of not getting it done while here, allowing the questions to remain. She is flat out scared of the answers. Not in a weak, immature Christian way; more like a "I am not afraid to die, but I want to watch my children grow up, and I want them to be with me as they do; I don't want my husband to suffer through that now." I think that a big part of her hesitation at doing it here was the real possibility that she could have had a serious problem secondary to surgery here, and her children not able to come to her in time, and her husband going through it alone.
I keep assuring her that we made the right decision, and that it was not hers to make but mine. I still believe it was the right decision, and we will simply plan to get the answers to these questions back home. It will just take a bit longer. Pray for her mind and emotions as much as you do her health. Our adversary is working overtime on her mind right now. Pray that I am able to understand and empathize, to connect in the ways she needs me to connect.
Pray also that things could happen quickly at Duke, and that at least on the node they would be in agreement.
Thank you all for your encouraging words. We read them together often. Thank you for your physical aid as well. Thank you for praying; we know that we are covered in the prayers of our brothers and sisters, co-laborers in the Kingdom, joint heirs with Christ. We know that we are being prayed for by our great High Priest, who longs to intercede on our behalf. These are the things that are true, and praiseworthy, and commendable. Praise God for them, and for you.
Tony
Thursday, October 19, 2006
Tuesday, October 17, 2006
Tuesday night
Hey folks. I don't really know how to write this one, because I am not really sure how to summarize today. First, some praises. Dee Dee definitely felt better today, and was able to get the octreatide scan done today. She thought of my brother during the scan, because Randy is fairly claustrophobic and this one lasted three hours, with her in a device that was inches from her face the whole time. The results basically confirmed....everything we already knew. She has stomach things and a lymph thing.
We met with the surgeons this afternoon. The stomach surgeon adamantly insists that the stomach tumors are not that big a deal. He wants to watch them every year, essentially forever, but that is all he wants to do.
I think we started to feel a little too happy, because when the chest surgeon came in his news was more than a little deflating. He looked at everything, and said, "That node is no good, and has to come out." He feels that it is as large as an egg. He discussed the possibilities, and while he felt that it was most likely carcinoid, it could be a lot of other things. On that list are breast cancer, lung cancer, and lymphatic cancer.
He wanted to do the surgery tomorrow. This would be a major surgery, with a lot of pain and a fair bit of risk, because it is in contact with two very important nerves (one to her vocal cords, one to her diaphragm, which controls breathing), and it is adjacent to her aorta and her heart. If it is cancerous, then it may be difficult to remove because it will be "attached" to everything it touches. She will be in the hospital for 3-5 days, with a lot of pain. She will have a drainage tube in her side, and until it stops draining she can't leave.
Because of the time of day, we had about 30 minutes to decide. We prayed, cried, and talked. Medically, it made sense to do it here. It is the fastest way to find out the answer; it guarantees that the same pathologist would look at both the stomach tumor slides and the lymph slides; we really liked the stomach guy here (Thompson); lots of reasons.
We decided to come home. If everything goes well, she preferred to have it done at home, where we have friends and family. More, though, we didn't prepare emotionally for major surgery. We didn't feel that we had adequately prepared our kids for Mom having that level of surgery. Bottom line, Dee Dee needed one more very special hug with her kids before a surgery that big. She told me she would follow my decision, but I could see in her eyes and hear in her voice that the thought of doing the surgery tomorrow was hurting her deeply. In the end, that was all I needed; we are coming home. We'll meet with the Duke surgeon next week on Thursday, and have surgery sometime after that.
So all the medicine here is done now. Our flight is not until Thursday, so we will try to fill the hours until then. There is not a lot of site-seeing to do here in beautiful Rochester, MN. We will continue to praise Him for His mercy, and His goodness. We will continue to trust Him as our Father who loves us perfectly. We will count the hours until we finally know what the node is all about. We pray that it might still be something other than cancer, and that she would not need more surgery or chemo/radiation. Thank you for your prayers and love over the past month (which, by the way, has actually lasted about 6-7 years), and especially these last few days.
Tony
We met with the surgeons this afternoon. The stomach surgeon adamantly insists that the stomach tumors are not that big a deal. He wants to watch them every year, essentially forever, but that is all he wants to do.
I think we started to feel a little too happy, because when the chest surgeon came in his news was more than a little deflating. He looked at everything, and said, "That node is no good, and has to come out." He feels that it is as large as an egg. He discussed the possibilities, and while he felt that it was most likely carcinoid, it could be a lot of other things. On that list are breast cancer, lung cancer, and lymphatic cancer.
He wanted to do the surgery tomorrow. This would be a major surgery, with a lot of pain and a fair bit of risk, because it is in contact with two very important nerves (one to her vocal cords, one to her diaphragm, which controls breathing), and it is adjacent to her aorta and her heart. If it is cancerous, then it may be difficult to remove because it will be "attached" to everything it touches. She will be in the hospital for 3-5 days, with a lot of pain. She will have a drainage tube in her side, and until it stops draining she can't leave.
Because of the time of day, we had about 30 minutes to decide. We prayed, cried, and talked. Medically, it made sense to do it here. It is the fastest way to find out the answer; it guarantees that the same pathologist would look at both the stomach tumor slides and the lymph slides; we really liked the stomach guy here (Thompson); lots of reasons.
We decided to come home. If everything goes well, she preferred to have it done at home, where we have friends and family. More, though, we didn't prepare emotionally for major surgery. We didn't feel that we had adequately prepared our kids for Mom having that level of surgery. Bottom line, Dee Dee needed one more very special hug with her kids before a surgery that big. She told me she would follow my decision, but I could see in her eyes and hear in her voice that the thought of doing the surgery tomorrow was hurting her deeply. In the end, that was all I needed; we are coming home. We'll meet with the Duke surgeon next week on Thursday, and have surgery sometime after that.
So all the medicine here is done now. Our flight is not until Thursday, so we will try to fill the hours until then. There is not a lot of site-seeing to do here in beautiful Rochester, MN. We will continue to praise Him for His mercy, and His goodness. We will continue to trust Him as our Father who loves us perfectly. We will count the hours until we finally know what the node is all about. We pray that it might still be something other than cancer, and that she would not need more surgery or chemo/radiation. Thank you for your prayers and love over the past month (which, by the way, has actually lasted about 6-7 years), and especially these last few days.
Tony
Monday, October 16, 2006
Pray tonight!
Just a quick note, please pray for her tonight. She is really pretty sick, and has been since this morning's procedure. She hasn't been able to eat, and just hurts. Lots of nausea. Minnesota may be a perfectly wonderful place, but right now we're not big fans.
She needs to not be sick for a few hours; she needs to not hurt; she needs to be able to sleep; and tomorrow she needs to be able to keep food down.
Also, she had to drink some fairly nasty medication tonight for tomorrow's test, and was unable to keep it down. Please pray that she is able to get the test done tomorrow despite that difficulty.
Thanks,
Tony
She needs to not be sick for a few hours; she needs to not hurt; she needs to be able to sleep; and tomorrow she needs to be able to keep food down.
Also, she had to drink some fairly nasty medication tonight for tomorrow's test, and was unable to keep it down. Please pray that she is able to get the test done tomorrow despite that difficulty.
Thanks,
Tony
Quick progress report
It is now 2:45 local time, and I just wanted to give a brief update. The long day is close to being over.
Dee Dee was quite ill after the morning procedures. We had to stop several times as I wheeled her through the hallways. This is a HUGE place! She has just, in the last hour, started feeling okay. She has been able to keep down some dry toast and ginger ale, which is progress.
She had the octreatide radioactive dye injection at 11:30, and the scan is set for 3:30. She will be re-scanned tomorrow at 8:00 a.m., but no new injection is needed. We meet with Dr. Thompson at 2:00 tomorrow, as well as with a thoracic surgeon (same time) to discuss not only the stomach but also the lymph node.
Please pray that Dee Dee feels well enough to eat when we finish the scan today; she has to stop eating at 7:00 tonight for the scan tomorrow a.m. Thankfully, she can eat a light breakfast tomorrow before the scan, but right now she's nearing 20+ hours with lots of medical procedures and no real food. Also, I feel guilty chowing down in front of her while she's too nauseous to eat; really, it becomes a prayer for me as much as her! (Grin)
Tony
Dee Dee was quite ill after the morning procedures. We had to stop several times as I wheeled her through the hallways. This is a HUGE place! She has just, in the last hour, started feeling okay. She has been able to keep down some dry toast and ginger ale, which is progress.
She had the octreatide radioactive dye injection at 11:30, and the scan is set for 3:30. She will be re-scanned tomorrow at 8:00 a.m., but no new injection is needed. We meet with Dr. Thompson at 2:00 tomorrow, as well as with a thoracic surgeon (same time) to discuss not only the stomach but also the lymph node.
Please pray that Dee Dee feels well enough to eat when we finish the scan today; she has to stop eating at 7:00 tonight for the scan tomorrow a.m. Thankfully, she can eat a light breakfast tomorrow before the scan, but right now she's nearing 20+ hours with lots of medical procedures and no real food. Also, I feel guilty chowing down in front of her while she's too nauseous to eat; really, it becomes a prayer for me as much as her! (Grin)
Tony
So far today (now 9:30 a.m.)
We made it to the bus at 6:30 without too much trouble, found the "Alfred" building at St. Mary's Hospital by 6:50, then waited until 8:00 to go back. I guess if a one-hour wait is the longest we have, that won't be too bad!
Dr. DeViggio is her endoscopy doc. She is having the procedure right now; they allowed me to go back into the room during the procedure to observe and to begin the dialogue. I have been present for all of our kids' deliveries, seen my wife's "insides" several times during C-sections. I have dissected cadavers. This was...different. Fascinating, and scary. I tried to be intelligent, but probably asked fairly standard, not-too-bright questions. They were at 21 tumors and counting when my presence in the room was evidently no longer useful. Most were very small and soft. He clipped many of them, and cauterized the spots. Some were larger, and about 6 were, in his words, "big." He resected most of them, and cauterized the sites to stop the bleeding.
He will study the tumors under microscope, but was unwilling to offer any early indication as to the early Mayo version of a diagnosis. They will have the microscopic results before our appointment with Dr. Thompson tomorrow at 2:00. Next up today is blood work, then day one of the octreotide scan.
Thanks for your prayers. It is nice hearing from everyone, especially some of you folks we don't get to see or talk with as much as we would wish.
More later,
Tony
Dr. DeViggio is her endoscopy doc. She is having the procedure right now; they allowed me to go back into the room during the procedure to observe and to begin the dialogue. I have been present for all of our kids' deliveries, seen my wife's "insides" several times during C-sections. I have dissected cadavers. This was...different. Fascinating, and scary. I tried to be intelligent, but probably asked fairly standard, not-too-bright questions. They were at 21 tumors and counting when my presence in the room was evidently no longer useful. Most were very small and soft. He clipped many of them, and cauterized the spots. Some were larger, and about 6 were, in his words, "big." He resected most of them, and cauterized the sites to stop the bleeding.
He will study the tumors under microscope, but was unwilling to offer any early indication as to the early Mayo version of a diagnosis. They will have the microscopic results before our appointment with Dr. Thompson tomorrow at 2:00. Next up today is blood work, then day one of the octreotide scan.
Thanks for your prayers. It is nice hearing from everyone, especially some of you folks we don't get to see or talk with as much as we would wish.
More later,
Tony
Sunday, October 15, 2006
Here in Minnesota
Well, after a day of traveling, we made it to our hotel in Rochester tonight at 7:15 local time. Tired, hungry, glad to be out of airports. It was, to say the least, a weird day.
Usually, Dee Dee and I enjoy travelling. We enjoy flying, we enjoy the anticipation of the trip, we enjoy experiencing a new place. Today, really yesterday as well, it was like we kept trying to summon up any sense of anticipation or enjoyment at the prospect of new things. We tried, but without success. The closer we got to Mayo, the less enjoyable the whole thing became. I think the reality of everything, yet again, hit as we started seeing highway signs for "Mayo Clinic."
It was sad to leave this morning as our children headed off to church with their grandmother, Memaw. We miss them, and are praying for them. Thank you for doing the same.
We have had times today when we laughed. God has continued to provide moments along the way when our love for one another has shined. He has given moments of laughter, and normalcy. We are genuinely touched by the number of people loving us and praying for us, and encouraging us.
We start tomorrow at 7:00 at St. Mary's Hospital, and adjunct hospital affiliated with Mayo. Bus leaves at 6:30, so we need to hit the sack. I'll write again soon.
Tony
Usually, Dee Dee and I enjoy travelling. We enjoy flying, we enjoy the anticipation of the trip, we enjoy experiencing a new place. Today, really yesterday as well, it was like we kept trying to summon up any sense of anticipation or enjoyment at the prospect of new things. We tried, but without success. The closer we got to Mayo, the less enjoyable the whole thing became. I think the reality of everything, yet again, hit as we started seeing highway signs for "Mayo Clinic."
It was sad to leave this morning as our children headed off to church with their grandmother, Memaw. We miss them, and are praying for them. Thank you for doing the same.
We have had times today when we laughed. God has continued to provide moments along the way when our love for one another has shined. He has given moments of laughter, and normalcy. We are genuinely touched by the number of people loving us and praying for us, and encouraging us.
We start tomorrow at 7:00 at St. Mary's Hospital, and adjunct hospital affiliated with Mayo. Bus leaves at 6:30, so we need to hit the sack. I'll write again soon.
Tony
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