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
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