Well, good news!!! Dr. Alsop did the EGD this morning, and found no big surprises. WHEW!!! We're both so relieved, we've been asleep since we got home!!!
He agreed with Dr. Beck that Al's esophagus has some stricture, and used a couple of tools to dilate the esophagus a bit. (Isn't that what they used to have to do for Uncle Lorran???) We're to call him on Monday and let him know if that helped him some, and if so, he feels that confirms the stricture as being the problem. Also, if need be, they can use ALL the tools to dilate his esophagus fully.
I didn't ask any smart questions, so I've started a list to ask on Monday when I call.
Al's resting pretty comfortably -- like he normall does following conscious sedation -- though he feels a little nauseous. Thanks for reminding me, Vicki, that they've been poking around on that 'gag me' zone.
He was surprised to find that his stomach wasn't empty, even though Al hadn't eaten anything for 12 hours, so he put him on a drug called Reglan to assist emptying his stomach. Said he saw no evidence whatsoever of acid refux or damage to the esophagus.
So we're good to go til the next update!!! Al's next CT scan is scheduled mid-January; I promise I'll send out a new update.
xoxoxo
Sharon
Thursday, November 16, 2006
Wednesday, November 15, 2006
Update on Al #43
Well, I guess I've been a little remiss in updates, since my last one was in June!!!
Al had another CT scan in September, and it came back clear as a bell again. Other than various aches and pains -- which tend to all get attributed to side effects from radiation -- he's been doing well.
He mentioned about a month ago that his throat was kind of sore, and we just figured it was a seasonal allergy or something. Then a couple of weeks ago, I took him to supper and he ordered steak, and I realized he seemed to be working to swallow it. THAT's when he tells me he's been having problems swallowing for about 3 weeks.
So you can bet we beat it to Dr. Beck's (oncologist) door first thing last Monday morning!!! He examined Al and discussed him with his internist, and they agreed on a barium swallow, expecting to find a stricture of his esophagus, which is evidently pretty easily resolved with an outpatient procedure. Well, the barium swallow showed all clear, so tomorrow morning they're doing an EGD which is a scope down his throat, esophagus, and into his stomach to look for scar tissue, masses, whatever.
Needless to say, we're both on pins and needles. I hesitated to share anything until we 'know' something, but thought a heads up would be the best bet. We're off to bed shortly to get up early to the outpatient section of the hospital. I'm actually looking forward to an update on the staff members' lives -- we saw them so regularly for several months, and now it's been a while. How nuts am I???
I'll update you as soon as I know anything definite. Keep us in your hearts.
xoxoxo
Sharon
Al had another CT scan in September, and it came back clear as a bell again. Other than various aches and pains -- which tend to all get attributed to side effects from radiation -- he's been doing well.
He mentioned about a month ago that his throat was kind of sore, and we just figured it was a seasonal allergy or something. Then a couple of weeks ago, I took him to supper and he ordered steak, and I realized he seemed to be working to swallow it. THAT's when he tells me he's been having problems swallowing for about 3 weeks.
So you can bet we beat it to Dr. Beck's (oncologist) door first thing last Monday morning!!! He examined Al and discussed him with his internist, and they agreed on a barium swallow, expecting to find a stricture of his esophagus, which is evidently pretty easily resolved with an outpatient procedure. Well, the barium swallow showed all clear, so tomorrow morning they're doing an EGD which is a scope down his throat, esophagus, and into his stomach to look for scar tissue, masses, whatever.
Needless to say, we're both on pins and needles. I hesitated to share anything until we 'know' something, but thought a heads up would be the best bet. We're off to bed shortly to get up early to the outpatient section of the hospital. I'm actually looking forward to an update on the staff members' lives -- we saw them so regularly for several months, and now it's been a while. How nuts am I???
I'll update you as soon as I know anything definite. Keep us in your hearts.
xoxoxo
Sharon
Monday, May 22, 2006
Update on Al #42 -- aka HALLELUJAH
HALLELUJAH
hal-le-lu-jah or hal-le-lu-iah or al-le-lu-ia
interjection
Definition:
1. used to express praise to God: used to express praise or thanks to God
2. USED TO EXPRESS RELIEF: used to express relief, welcome or gratitude, i.e.
Hallelujah! The cancer is gone!!!
Well, you can choose the definition you're the most comfortable with, but I can't think of another word that better describes how we feel today after seeing Dr. Beck. The PET Scan is clear as a bell, life is good, and we will go on (sorry, I really didn't mean to plant the theme song from the 'Titanic' in all your brains!).
Al will be having quarterly CT scans, then they'll go to semi-annual "for a few years", and then "we'll be rid of you". Laughingly, Dr. Beck admitted that if he never had to treat Al for anything again, he'd be perfectly happy "never to touch you again" -- due to Al's weird reactions to things, and how every treatment seems to go backwards on him!!!
Speaking of weird reactions to things, he's been having a reaction to the dye from the PET Scan, so we visited the ER yesterday morning. They took a look and sent him home with over the counter meds. No better, and Al was completely miserable this morning, so we went back to the ER -- without a shower OR my morning glass of milk, thank you very much!! -- where they treated him for a few hours, and sent him home to rest and recuperate. But we cheated, and went to Dr. Beck's office (only 90 minutes late).
I fear once he's feeling better, we're going to be difficult to live with, as we received a letter last week informing us that we're never going to have to make a mortgage payment again. When we bought the house in the early 80s, we did so under a special program for first-time homeowners. Turns out, the bonds issued that funded that program were paid off recently, and the legalese states that if the mortgage is still outstanding when the bonds are retired, the mortgage is 'forgiven'. The downside is that we will have to pay taxes on the balance in some fashion as income, so I'm just going to put those mortgage payments into savings to pay those (I estimated it in 2005's Turbo Tax), and we should be good to go come April!!!
So, you can bet we bought a Lottery Ticket for Saturday's drawing!!! LOL!!! Haven't checked it yet. If we win, I'm sticking with my plans to rent a tour bus and driver to visit friends all over the country; I'm thinking I'll need to start in Seattle. Al hasn't decided whether he wants to tag along just yet for the full ride, but BOTH Emerald Cities are on our list.
Now that Al's cold is gone, he sounds a lot better. He's been having some problems with his LEFT knee, but it seems to be getting better. He still hates the CPAP, but he's working on it.
I'm good -- I can get into the garden, play in the den and enjoy time with Al when I'm not off at work antagonizing the general public. It's coming along, with a little help from our friends. (BTW, Ed, thanks for pulling up all those little weed trees!!!)
I'm going to log off now, and run around to fetch supplies from the drugstore, etc.
Hope this finds you all safe and not TOO warm!!! Thanks for keeping us in your hearts!!!
xoxoxo
Sharon
hal-le-lu-jah or hal-le-lu-iah or al-le-lu-ia
interjection
Definition:
1. used to express praise to God: used to express praise or thanks to God
2. USED TO EXPRESS RELIEF: used to express relief, welcome or gratitude, i.e.
Hallelujah! The cancer is gone!!!
Well, you can choose the definition you're the most comfortable with, but I can't think of another word that better describes how we feel today after seeing Dr. Beck. The PET Scan is clear as a bell, life is good, and we will go on (sorry, I really didn't mean to plant the theme song from the 'Titanic' in all your brains!).
Al will be having quarterly CT scans, then they'll go to semi-annual "for a few years", and then "we'll be rid of you". Laughingly, Dr. Beck admitted that if he never had to treat Al for anything again, he'd be perfectly happy "never to touch you again" -- due to Al's weird reactions to things, and how every treatment seems to go backwards on him!!!
Speaking of weird reactions to things, he's been having a reaction to the dye from the PET Scan, so we visited the ER yesterday morning. They took a look and sent him home with over the counter meds. No better, and Al was completely miserable this morning, so we went back to the ER -- without a shower OR my morning glass of milk, thank you very much!! -- where they treated him for a few hours, and sent him home to rest and recuperate. But we cheated, and went to Dr. Beck's office (only 90 minutes late).
I fear once he's feeling better, we're going to be difficult to live with, as we received a letter last week informing us that we're never going to have to make a mortgage payment again. When we bought the house in the early 80s, we did so under a special program for first-time homeowners. Turns out, the bonds issued that funded that program were paid off recently, and the legalese states that if the mortgage is still outstanding when the bonds are retired, the mortgage is 'forgiven'. The downside is that we will have to pay taxes on the balance in some fashion as income, so I'm just going to put those mortgage payments into savings to pay those (I estimated it in 2005's Turbo Tax), and we should be good to go come April!!!
So, you can bet we bought a Lottery Ticket for Saturday's drawing!!! LOL!!! Haven't checked it yet. If we win, I'm sticking with my plans to rent a tour bus and driver to visit friends all over the country; I'm thinking I'll need to start in Seattle. Al hasn't decided whether he wants to tag along just yet for the full ride, but BOTH Emerald Cities are on our list.
Now that Al's cold is gone, he sounds a lot better. He's been having some problems with his LEFT knee, but it seems to be getting better. He still hates the CPAP, but he's working on it.
I'm good -- I can get into the garden, play in the den and enjoy time with Al when I'm not off at work antagonizing the general public. It's coming along, with a little help from our friends. (BTW, Ed, thanks for pulling up all those little weed trees!!!)
I'm going to log off now, and run around to fetch supplies from the drugstore, etc.
Hope this finds you all safe and not TOO warm!!! Thanks for keeping us in your hearts!!!
xoxoxo
Sharon
Saturday, April 22, 2006
Update on Al #41
It's been awhile (six weeks!!) since I've sent an update, and a few things have changed, so thought we were due for one.
I completely forgot to send an update (though I thought I had, really!) after we got the results of his latest CT scan. Sorry about that. The tests show no change, in fact it doesn't even report a tumor, merely a 'fullness' in the neck region. Dr. Beck sees this as a very positive improvement, and Al confessed to me this week he believes the cancer is gone. Now we just need to get rid of the side effects from all that radiation.
Happily, I spoke with one of the PTs in our office, and Al's been seeing her for about a month. In two visits a week, the circumference of his neck has decreased 4 centimeters as a result of her treatment, and it seems to help. They've shown me how to perform the massage of his lymph nodes, so hopefully we can keep some of that fluid reduced with treatment at home.
In our meeting with Dr. Berquist, he confirmed the vocal cord paralysis is a new development, that he expects it to be permanent, and indeed recommended a sleep study. Al did the sleep study on March 31 (and brought home a nasty cold), and we went for follow-up this week. He believes the edema in Al's throat would be decreased with a CPAP machine to relieve his sleep apnea, and we now have a new bed partner. It's surprisingly quiet, and actually pretty easy. Al looks a LOT like an alien -- or maybe a bug! -- in his face mask contraption. Well, it's really more of a huge nose cover with an elastic 'headgear' strap. The downside is that Dr. Berquist expects him to gain maybe 10% in oxygen saturation while he's sleeping (according to the test, he gets about 85% in his sleep), which should help relieve the edema, and provide more oxygen to his muscles, etc. so he feels better during the day.
I'VE adjusted to the CPAP just fine. LOL Al is convinced on a logical level, but is really questioning it on a physical level. He says he feels like it's even harder to breathe in the morning after the machine's been on all night. I remind him it's only been a couple of nights, and both Dr. Berquist and the respiratory therapist said to give it a fair trial, he needs to use it for 2-3 MONTHS to get used to it.
As Nathan can tell you, Al's voice is nearly non-existent at times. This cold has made it worse, and he generally reserves his voice for when he goes to work and HAS to use it. He's increased to about 30 hours a week, and trying to get back up to his regular 40 hours. He's been keeping quite busy at home, throwing himself into the work here at home and in the yard and garden, as well as the garage. He's very dedicated just now to ridding the yard of the fescue that pops in among the bermuda we cultivate.
I'm just plugging away per usual. It's taking more work this spring to get the garden in shape due to the neglect of last season, but we'll get there. You all know I can go on and on and on about the garden, but let's give the glory just now to the 'Miss Kim' WHITE lilac that's blooming like mad just outside the window next to my computer.
Hope all is going well with all of you. Thanks for keeping us in your heart.
xoxoxo
Sharon
I completely forgot to send an update (though I thought I had, really!) after we got the results of his latest CT scan. Sorry about that. The tests show no change, in fact it doesn't even report a tumor, merely a 'fullness' in the neck region. Dr. Beck sees this as a very positive improvement, and Al confessed to me this week he believes the cancer is gone. Now we just need to get rid of the side effects from all that radiation.
Happily, I spoke with one of the PTs in our office, and Al's been seeing her for about a month. In two visits a week, the circumference of his neck has decreased 4 centimeters as a result of her treatment, and it seems to help. They've shown me how to perform the massage of his lymph nodes, so hopefully we can keep some of that fluid reduced with treatment at home.
In our meeting with Dr. Berquist, he confirmed the vocal cord paralysis is a new development, that he expects it to be permanent, and indeed recommended a sleep study. Al did the sleep study on March 31 (and brought home a nasty cold), and we went for follow-up this week. He believes the edema in Al's throat would be decreased with a CPAP machine to relieve his sleep apnea, and we now have a new bed partner. It's surprisingly quiet, and actually pretty easy. Al looks a LOT like an alien -- or maybe a bug! -- in his face mask contraption. Well, it's really more of a huge nose cover with an elastic 'headgear' strap. The downside is that Dr. Berquist expects him to gain maybe 10% in oxygen saturation while he's sleeping (according to the test, he gets about 85% in his sleep), which should help relieve the edema, and provide more oxygen to his muscles, etc. so he feels better during the day.
I'VE adjusted to the CPAP just fine. LOL Al is convinced on a logical level, but is really questioning it on a physical level. He says he feels like it's even harder to breathe in the morning after the machine's been on all night. I remind him it's only been a couple of nights, and both Dr. Berquist and the respiratory therapist said to give it a fair trial, he needs to use it for 2-3 MONTHS to get used to it.
As Nathan can tell you, Al's voice is nearly non-existent at times. This cold has made it worse, and he generally reserves his voice for when he goes to work and HAS to use it. He's increased to about 30 hours a week, and trying to get back up to his regular 40 hours. He's been keeping quite busy at home, throwing himself into the work here at home and in the yard and garden, as well as the garage. He's very dedicated just now to ridding the yard of the fescue that pops in among the bermuda we cultivate.
I'm just plugging away per usual. It's taking more work this spring to get the garden in shape due to the neglect of last season, but we'll get there. You all know I can go on and on and on about the garden, but let's give the glory just now to the 'Miss Kim' WHITE lilac that's blooming like mad just outside the window next to my computer.
Hope all is going well with all of you. Thanks for keeping us in your heart.
xoxoxo
Sharon
Thursday, March 02, 2006
Update on Al #40
Hi all!!! Sorry I'm a bit late, but GMail didn't want to work last night, and I was too tired to be patient!!!
The good news is that there is still no sign of tumor via bronchoscopy. That's no change from the last bronch 2-3 months ago.
The bad news -- though Al doesnt' seem fazed by it -- is that his right vocal chord appears to be paralyzed. Dr. Berquist says this is no doubt the result of his radiation treatments. And he expects it's permanent. My only thought was "I'm never going to hear my sweetheart's natural voice again." Al's comment was "why didn't he tell us about this BEFORE now???" He also wonders whether it's always been that way, as he had a freak accident as a toddler that affected his vocal cords. So when we see Dr. Berquist next week, we're going to ask a few more questions than I had the presence of mind for.
Dr. Berquist also commented how much swelling Al has in his throat, and believes this edema would be decreased with a CPAP machine to relieve his sleep apnea. We've done this before, if you'll recall, after his bypass surgery in 2000. This version makes more sense to us both, so we're going forward with it. I think Al's relieved to know this on-again, off-again swelling really ISN'T just in his mind, and more importantly, there's probably something we can do about it.
Now he's anxious to get Dr. Beck to order that PET scan. I'm anxious to see what the CT scan reveals -- we'll have that news on Monday morning. So I'll update you again Monday evening.
Hope all is going well with all of you. We're both looking forward to our annual Valentine tradition tomorrow -- going to the Wichita Garden Show, and spending the day away from home alone together. Thanks for keeping us in your heart.
xoxoxo
Sharon
The good news is that there is still no sign of tumor via bronchoscopy. That's no change from the last bronch 2-3 months ago.
The bad news -- though Al doesnt' seem fazed by it -- is that his right vocal chord appears to be paralyzed. Dr. Berquist says this is no doubt the result of his radiation treatments. And he expects it's permanent. My only thought was "I'm never going to hear my sweetheart's natural voice again." Al's comment was "why didn't he tell us about this BEFORE now???" He also wonders whether it's always been that way, as he had a freak accident as a toddler that affected his vocal cords. So when we see Dr. Berquist next week, we're going to ask a few more questions than I had the presence of mind for.
Dr. Berquist also commented how much swelling Al has in his throat, and believes this edema would be decreased with a CPAP machine to relieve his sleep apnea. We've done this before, if you'll recall, after his bypass surgery in 2000. This version makes more sense to us both, so we're going forward with it. I think Al's relieved to know this on-again, off-again swelling really ISN'T just in his mind, and more importantly, there's probably something we can do about it.
Now he's anxious to get Dr. Beck to order that PET scan. I'm anxious to see what the CT scan reveals -- we'll have that news on Monday morning. So I'll update you again Monday evening.
Hope all is going well with all of you. We're both looking forward to our annual Valentine tradition tomorrow -- going to the Wichita Garden Show, and spending the day away from home alone together. Thanks for keeping us in your heart.
xoxoxo
Sharon
Thursday, January 05, 2006
Update on Al #39
Hey everybody!!! Remember, when it comes to our health, NO news is GOOD news!!!
Al had his latest CT scan yesterday, and I'm happy to say there's no bad news to report. The mass hasn't gotten smaller -- this radiologist reported it at 1.5 centimeters (compared with 1.3 in December) -- but the lymph nodes are looking normal, and there was no mention of a mass near the hyoid bone as report last time. Dr. Beck was concerned, until Al told him that his throat feels swollen off and on, and yesterday was one of the days it felt swollen. The doc said this is not unusual as after effects of his radiation, and confirmed the same when Al's throat is sore, which again is off and on.
He wants to have another CT scan in TWO months (whereas they have been every month), and have Dr. Berquist "take a final look" via bronchoscopy which is scheduled for March 1. But the really GOOD news is he agreed Al could have the PEGG tube removed. Al's ecstatic! It's really the only thing he's complained of on a regular basis in the past month or more. (He mentions the sore throat or swelling, but doesn't really complain about those!) The PEGG has been real awkward since he's gotten more active -- namely at work for the most part. Oh yeah, if all looks good after the bronchoscopy, they'll probably remove the infusion port as well.
So we'll keep hoping for continued improvement, and an easy PEGG removal. He had the choice of going to the doctor's office for removal WITHOUT sedation, but considering the discomfort level he had when it was initially installed, we agreed sedated removal as a hospital outpatient made more sense. Sounds like Tuesday morning, but I need to call Dr. Alsop's office to confirm.
By the way, Al turns 50 on January 16. I'd love for him to be 'showered' with cards -- THIS year especially, after all he's been through. Join in if you'd like, and send them to Al Steponick, 333 Yale Ave, Salina, KS 67401-7369. Thanks!
Meanwhile, I think every 'child' should read this, and every 'parent' should remember it.
Beaner, thanks for sharing the link with me -- it's SO accurate.
If I missed you on our recent self-portrait, check it out here.
Nate, give us a buzz sometime. The phone number I have for you (628-something) doesn't work any more, so I'm thinking you have a Salina number now? BTW, when I drive by and honk, tell Desi it's customary to wave!!! (You ARE on my route to and from work, remember!!!)
Vic, keep me posted next week.
Pam, I have your Christmas photos here. How's Roger doing by now?
John, how was your Christmas? Hope you had a great visit, and that you enjoyed the gift we left you in the freezer!!!
Steph, I really haven't fallen off the planet. Promise.
Chat chicks (you know who you are!!!), we need to organize a visit . . . soon!!! Rainy, what night(s) are you off?
Again, thanks to all of you for your ongoing support. Please continue to keep us in your hearts.
xoxoxo
Sharon
Al had his latest CT scan yesterday, and I'm happy to say there's no bad news to report. The mass hasn't gotten smaller -- this radiologist reported it at 1.5 centimeters (compared with 1.3 in December) -- but the lymph nodes are looking normal, and there was no mention of a mass near the hyoid bone as report last time. Dr. Beck was concerned, until Al told him that his throat feels swollen off and on, and yesterday was one of the days it felt swollen. The doc said this is not unusual as after effects of his radiation, and confirmed the same when Al's throat is sore, which again is off and on.
He wants to have another CT scan in TWO months (whereas they have been every month), and have Dr. Berquist "take a final look" via bronchoscopy which is scheduled for March 1. But the really GOOD news is he agreed Al could have the PEGG tube removed. Al's ecstatic! It's really the only thing he's complained of on a regular basis in the past month or more. (He mentions the sore throat or swelling, but doesn't really complain about those!) The PEGG has been real awkward since he's gotten more active -- namely at work for the most part. Oh yeah, if all looks good after the bronchoscopy, they'll probably remove the infusion port as well.
So we'll keep hoping for continued improvement, and an easy PEGG removal. He had the choice of going to the doctor's office for removal WITHOUT sedation, but considering the discomfort level he had when it was initially installed, we agreed sedated removal as a hospital outpatient made more sense. Sounds like Tuesday morning, but I need to call Dr. Alsop's office to confirm.
By the way, Al turns 50 on January 16. I'd love for him to be 'showered' with cards -- THIS year especially, after all he's been through. Join in if you'd like, and send them to Al Steponick, 333 Yale Ave, Salina, KS 67401-7369. Thanks!
Meanwhile, I think every 'child' should read this, and every 'parent' should remember it.
Beaner, thanks for sharing the link with me -- it's SO accurate.
If I missed you on our recent self-portrait, check it out here.
Nate, give us a buzz sometime. The phone number I have for you (628-something) doesn't work any more, so I'm thinking you have a Salina number now? BTW, when I drive by and honk, tell Desi it's customary to wave!!! (You ARE on my route to and from work, remember!!!)
Vic, keep me posted next week.
Pam, I have your Christmas photos here. How's Roger doing by now?
John, how was your Christmas? Hope you had a great visit, and that you enjoyed the gift we left you in the freezer!!!
Steph, I really haven't fallen off the planet. Promise.
Chat chicks (you know who you are!!!), we need to organize a visit . . . soon!!! Rainy, what night(s) are you off?
Again, thanks to all of you for your ongoing support. Please continue to keep us in your hearts.
xoxoxo
Sharon
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