We saw an otolaryngologist(good one huh? That's one more to cross off the ist list;) not a brain surgeon, today, and he said that what happened seemed to be a rare fluke and that he would be really surprised if it ever happened again. No surgery although we will need to do a follow up CT scan in 4 weeks just for fun.
I vote with the dr that it should never, ever happen again. That's 2 votes. Anyone else? Majority rules, right?
I also vote that we should be required to follow the little protocol they have outlined and stop these distracting side shows.
The trial treatment protocol seemed overwhelmingly traumatic but compared to things that could be it just doesn't look so bad anymore. I would count ourselves quite lucky to experience just the protocol as outlined.
Anyway, I am happy to go home this weekend and regroup our family.
Tuesday, July 31, 2007
Saturday, July 28, 2007
mini update
We're doing fine today.
Scott has had no other episodes although his vision has not returned to normal and is a little light sensitive. We are meeting with a neurosurgeon on Tuesday to gather his opinion.
Gradually, we are checking off all the ist's as if it were a game to visit each of the states. He is missing podiatrist, urologist, gynocologist, and proctologist. Scott is not anxious to meet any of them for some reason.
Scott has had no other episodes although his vision has not returned to normal and is a little light sensitive. We are meeting with a neurosurgeon on Tuesday to gather his opinion.
Gradually, we are checking off all the ist's as if it were a game to visit each of the states. He is missing podiatrist, urologist, gynocologist, and proctologist. Scott is not anxious to meet any of them for some reason.
Thursday, July 26, 2007
Something Bizarre
We are listening to Harry Potter. I have already read the book and am working very hard to not spoil it at all for Scott. It is a nice diversion.
This week has been bizarre. I think it might become an overall theme for the year.
Tuesday, the 24th, Scott had some eye pain with blurriness. On our way to the hospital, his left eye went numb and stopped tracking with the other eye. It only lasted a few minutes but the drs have spent days trying to figure it out and still have no clear cut idea of what is wrong.
One CT scan shows how the bone behind his left frontal sinus is paper thin. The menanges, lining around the brain, shows irritation right at the spot where the bone is the thinnest. A spinal tap shows no sign of infection which is good. Anyway, one dr says it might be this and we should do something quite drastic, one dr says it might be that and to just wait it out. Everyone agrees that something is wrong but no one really knows what to do.
Since he wasn't having symptoms anymore and they couldn't think of any other uncomfortable tests (if they had thought of a pap smear I'm sure they wouldh've attempted it:) they had to send him home. We drove straight to Chile's so he could eat ribs because out of the 48 hours he was detained they only fed him once. They shouldn't wonder why he is losing weight.
Anyway, he is currently comfortable and without symptoms except for some residual blurriness. We are staying the weekend here in Salt Lake with family(Thank You!). The kids are farmed out to various cousins and grandparents and for the most part having a great time.
I think I may be developing an emotional callous. This could be more unpleasant than the thyroid thing but it doesn't seem to be traumatic anymore. I guess there comes a point of whatever happens, happens and we'll deal with it no matter what. Any pretense of control has been blasted off the planet. The situation becomes an issue of God's will and what experiences he deems necessary for our growth.
It is a luxury to let God worry about it and only carry the burden of breathing. Although, considering I have bad breath, it is probably a burden for everyone.
This week has been bizarre. I think it might become an overall theme for the year.
Tuesday, the 24th, Scott had some eye pain with blurriness. On our way to the hospital, his left eye went numb and stopped tracking with the other eye. It only lasted a few minutes but the drs have spent days trying to figure it out and still have no clear cut idea of what is wrong.
One CT scan shows how the bone behind his left frontal sinus is paper thin. The menanges, lining around the brain, shows irritation right at the spot where the bone is the thinnest. A spinal tap shows no sign of infection which is good. Anyway, one dr says it might be this and we should do something quite drastic, one dr says it might be that and to just wait it out. Everyone agrees that something is wrong but no one really knows what to do.
Since he wasn't having symptoms anymore and they couldn't think of any other uncomfortable tests (if they had thought of a pap smear I'm sure they wouldh've attempted it:) they had to send him home. We drove straight to Chile's so he could eat ribs because out of the 48 hours he was detained they only fed him once. They shouldn't wonder why he is losing weight.
Anyway, he is currently comfortable and without symptoms except for some residual blurriness. We are staying the weekend here in Salt Lake with family(Thank You!). The kids are farmed out to various cousins and grandparents and for the most part having a great time.
I think I may be developing an emotional callous. This could be more unpleasant than the thyroid thing but it doesn't seem to be traumatic anymore. I guess there comes a point of whatever happens, happens and we'll deal with it no matter what. Any pretense of control has been blasted off the planet. The situation becomes an issue of God's will and what experiences he deems necessary for our growth.
It is a luxury to let God worry about it and only carry the burden of breathing. Although, considering I have bad breath, it is probably a burden for everyone.
Tuesday, July 17, 2007
Day 1
Everything went well this morning, better than I had expected. Scott is exhausted and sleeping soundly which I don't mind in the least.
There is one other person on the cholangiocarcinoma protocol at the hospital. We have not met him but supposedly he is able to work. His main complaint is that he is very tired.
Scott is not nauseated right now for which I am relieved. I think it has been the most uncomfortable side effect of the procedures and surgeries. Except for the most severe pain, pain can usually be endured until the medication for it kicks in. Nausea is torture because if Scott starts throwing up he often cannot stop and it is not always relieved by meds.
I am convinced that not many people in the world can vomit gracefully and Scott is certainly no exception to that.
There is one other person on the cholangiocarcinoma protocol at the hospital. We have not met him but supposedly he is able to work. His main complaint is that he is very tired.
Scott is not nauseated right now for which I am relieved. I think it has been the most uncomfortable side effect of the procedures and surgeries. Except for the most severe pain, pain can usually be endured until the medication for it kicks in. Nausea is torture because if Scott starts throwing up he often cannot stop and it is not always relieved by meds.
I am convinced that not many people in the world can vomit gracefully and Scott is certainly no exception to that.
Tuesday, July 10, 2007
current schedule
Scott is scheduled to start chemo/radiation on Tuesday the 17th. There is a "dry run" on Monday the 16th. This starts the 5 week, Monday thru Friday radiation treatment regimine. He has chemotherapy only the first three days to make the radiation more effective.
After the 5 week deal he will take oral chemotherapy pills that are not supposed to be too bad. He is not supposed to lose his hair or get deathly ill. I am not holding my breath for supposedly's as I have been surprised just too many times. Still, I am hopeful.
We are not excited to start but quite anxious to finish.
After the 5 week deal he will take oral chemotherapy pills that are not supposed to be too bad. He is not supposed to lose his hair or get deathly ill. I am not holding my breath for supposedly's as I have been surprised just too many times. Still, I am hopeful.
We are not excited to start but quite anxious to finish.
Thursday, July 5, 2007
Extreme Blessings
Scott had surgery on Tuesday. We just found out that the tumor was benign. It is an extreme blessing.
Scott is tired but recovering. He has not had pain since the dr took out the drain in his neck this morning and has slept all day. Even after the one day on lortab he was having graphic dreams. He's so much more sane if he can sleep.
Well, with this out of the way we should be able to start the chemo and radiation. Everything was canceled until the thyroid tumor was taken care of. I'm not very anxious to get started but it will be an extreme blessing to get it over with.
Speaking of extreme blessings, we have been floored at the outpouring of love and support we have recieved from our family, friends and people we have never even met. It's so humbling to recieve cards and food, have your neglected lawn mowed and watered and we sincerely appreciate phone calls and visits. Distractions have been so valuable. It is so nice to go to a friend's house and laugh. I have always been afraid of bothering people who are under a lot of stress but now I realize that friendship is a much bigger gift than a casserole.
A huge blessing to our family is that my children are seeing all this happen. Someone had been so incredibly kind to us and when I pointed it out to the children JA said,"Wow! This is the first miracle we've had for days!" I'm grateful that they get to see the impact that little and big acts of service and kindness have on people. We do service and don't really realize just how much of a difference it makes to the people on the other side. It means so much more to us now having been there.
Yesterday, I was given peace and the distinct impression that Scott would live but that this level of stress would be par for the whole course. It's been pleasant day for me even before the dr called. Peace must be the biggest blessing of all.
Scott is tired but recovering. He has not had pain since the dr took out the drain in his neck this morning and has slept all day. Even after the one day on lortab he was having graphic dreams. He's so much more sane if he can sleep.
Well, with this out of the way we should be able to start the chemo and radiation. Everything was canceled until the thyroid tumor was taken care of. I'm not very anxious to get started but it will be an extreme blessing to get it over with.
Speaking of extreme blessings, we have been floored at the outpouring of love and support we have recieved from our family, friends and people we have never even met. It's so humbling to recieve cards and food, have your neglected lawn mowed and watered and we sincerely appreciate phone calls and visits. Distractions have been so valuable. It is so nice to go to a friend's house and laugh. I have always been afraid of bothering people who are under a lot of stress but now I realize that friendship is a much bigger gift than a casserole.
A huge blessing to our family is that my children are seeing all this happen. Someone had been so incredibly kind to us and when I pointed it out to the children JA said,"Wow! This is the first miracle we've had for days!" I'm grateful that they get to see the impact that little and big acts of service and kindness have on people. We do service and don't really realize just how much of a difference it makes to the people on the other side. It means so much more to us now having been there.
Yesterday, I was given peace and the distinct impression that Scott would live but that this level of stress would be par for the whole course. It's been pleasant day for me even before the dr called. Peace must be the biggest blessing of all.
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