As you all know, this morning we went to the doctor to get the results from Vic's PET scan last week. I'm extraordinarily pleased to report that the doctor said "There is no active cancer that the PET scan can detect—not in the tongue, not in the lymph nodes, not anywhere."
It is basically the best result we could possibly hope for, and we are, as you can imagine, over the moon.
Monday, December 12, 2011
Sunday, December 4, 2011
What do you mean, it's been awhile? ;-)
OK, OK, it's been awhile since I updated the blog.
Well, you see, shortly after the last update, we had a bit of a tiff (a.k.a. a knock-down, drag-out fight), and I didn't feel like updating the blog. Then there was a lot of updating to do, and I didn't have the time. But people are starting to notice that it hasn't been updated, and they are wondering if we are still alive.
We are! So without further ado, the update.
I don't want to talk about the fight. If you've been following the blog, you probably already know what it was about. And if you fight with your spouse, you pretty much know about how it went. Suffice it to say that we are mended now and back on a happy path.
One of the things that has put us on the happy path is the discovery of a tube food that doesn't make Vic sick. His old "food" was just getting harder and harder to take, making him more nauseated and less inclined to want to feed or to try to eat anything by mouth (even if he could). A friend of his brought over an Ensure-like drink called Nutrilife, and he started drinking one of those in the morning, which made his first feed of the day slightly less awful. He also tried some eggnog at her house, and he started drinking that to get some calories. But those were only stopgap measures—we had to find a tube food that worked! So we called the nutritionist at Apria (where he gets his "food" from), and she raided their warehouses and brought us up several other kinds of "food."
The first one he tried was a "food" that was actually made from food rather than a formula of stuff. It was much better than the original, but it was only 240 calories. He was going to have to drink, like, eight cans of it a day. The second one he tried was a formula, but a slightly less dense one than the original. It wasn't as good as the first one, but still better than the origial.
But the third one. The third one. Oh, yes, the third one! It carried almost no side effects. It was 300 calories, so he only needs six cans a day (maybe five, if he's eating other things). So we ordered a bunch of that, and it has been pretty smooth sailing ever since. It only takes about 20–30 minutes to feed, and then he can do things for the next hour and a half. Before, it would take at least an hour to get the "food" down, and then he'd have to nap for another hour or two just to feel better. He'd wake up, and it would immediately be time to feed again, and the cycle would start all over. He was miserable. But this new food really works for him. It's still not perfect, but compared to the other food, it is a godsend.
Unfortunately, the news on the swallowing front isn't as promising. We had a follow-up appointment with the gastrointestinal (GI) doctor a couple of weeks ago. Vic reported that swallowing hadn't improved much, and the GI doctor said they could dilate another 3 mm or so (which would be normal swallowing size), but that was about as far as they could go without risking damage. When I said, "As he continues to swallow, will that help? Like if you use your muscles, they get used to being used?" And he said, "Not really. That scar tissue will probably always cause his throat to want to close up, and we'll probably have to do throat dilations for the rest of whatever."
This was a real blow to Vic, and that's when he finally realized that his life may never be what it was before the cancer. (Damn cancer.) All this time, we were thinking that the recovery wll be slow, but when it's over, life will be the same. But no, it doesn't look that way. I think I would have used this as an excuse to take to my bed and feel sorry for myself for a week (or more), but it had the opposite effect on Vic. It made him more determined to take charge of his recovery. On one of our afternoon walks, he said "All this time, I've been waiting for the corner to come to me. Now I know that if I'm going to turn the corner, I'm going to have to walk there myself." He's been faithfully ingesting five cans a day, drinking as much other stuff as he can, and trying new things. We went to Tokyo Joe's the other day—he'd been craving California rolls—and he was able to eat three-and-a-half pieces out of the four he ordered! He is eating more soup when he makes it, and he is able to eat three jumbo shrimps at a time. Other things haven't been as successful, and some have been downright disappointing—but he keeps trying despite the disappointment. I am really, really proud of him.
Thanksgiving was only slightly disappointing. It's Vic's favorite holiday. He loves just visiting with our families, and of course, eating. But it's a very long day. Between his sisters and mine, it's an eight- to ten-hour day, which probably would have knocked him out for a week. And of course, it is an eating holiday, and even though things are getting better, they aren't getting that much better just yet. He would have had to feed three times from his stupid canned food while everyone around him was gorging themselves on the most delicious food in the world. So we didn't go out for Thanksgiving. But his wonderful sister Alice brought up the moistest turkey, the smoothest mashed potatoes and a vat of gravy the day before Thanksgiving, and that's what we had on Thanskgiving day. He wasn't able to eat a lot of it (besides the swallowing issue, his mouth is still so dry that it's hard to eat anything he has to chew, and don't get me started again on the mucous), but he said it sure did taste good. The day after Thanksgiving, his other wonderful sister Patty brought up more moist turkey, more mashed potatoes, the stuffing he had been craving, sweet potatoes and pumpkin pie. Again, he wasn't able to eat a lot of it, but he said it tasted delicious. His sisters sure do love him.
Next up (insert ominous music): the follow-up PET scan to determine whether the treatment worked. It's this Wednesday, and although our medical people seem very sure of themselves, we are starting to get a little nervous. Then he has a doctor's appointment with the radiation oncologist on Monday (12/12) to get the results. You will certainly get a post from me that day—either way.
Since it was just Thanksgiving, I want to take a quick moment to once again thank all our family and friends for all your support. I see little things here and there that tell me you are still thinking of us, and all your thoughts and prayers and healing energy are keeping us going every day.
I'd like to leave you this week with another picture of Wags (shocker). We started writing The Scallion this weekend. It's a little tricky to write this year because I've been blogging and I feel like I've used up all the good lines. But we think we have a good start. We should be able to finish it up next weekend (or weekEND, as my English friend Michelle would pronounce it), and you should see it in your mailboxes (or e-mail inboxes) the week after. Anyway, part of The Scallion is our annual holiday picture. Wags is getting really good at taking these pictures. She scoots into my lap pretty well, and she drops the ball practically on cue. But every once in a while, she gets a little excited that Dad is coming to join us at the tree, and this is the result:
Happy day—see ya back here in a week or so!
Well, you see, shortly after the last update, we had a bit of a tiff (a.k.a. a knock-down, drag-out fight), and I didn't feel like updating the blog. Then there was a lot of updating to do, and I didn't have the time. But people are starting to notice that it hasn't been updated, and they are wondering if we are still alive.
We are! So without further ado, the update.
I don't want to talk about the fight. If you've been following the blog, you probably already know what it was about. And if you fight with your spouse, you pretty much know about how it went. Suffice it to say that we are mended now and back on a happy path.
One of the things that has put us on the happy path is the discovery of a tube food that doesn't make Vic sick. His old "food" was just getting harder and harder to take, making him more nauseated and less inclined to want to feed or to try to eat anything by mouth (even if he could). A friend of his brought over an Ensure-like drink called Nutrilife, and he started drinking one of those in the morning, which made his first feed of the day slightly less awful. He also tried some eggnog at her house, and he started drinking that to get some calories. But those were only stopgap measures—we had to find a tube food that worked! So we called the nutritionist at Apria (where he gets his "food" from), and she raided their warehouses and brought us up several other kinds of "food."
The first one he tried was a "food" that was actually made from food rather than a formula of stuff. It was much better than the original, but it was only 240 calories. He was going to have to drink, like, eight cans of it a day. The second one he tried was a formula, but a slightly less dense one than the original. It wasn't as good as the first one, but still better than the origial.
But the third one. The third one. Oh, yes, the third one! It carried almost no side effects. It was 300 calories, so he only needs six cans a day (maybe five, if he's eating other things). So we ordered a bunch of that, and it has been pretty smooth sailing ever since. It only takes about 20–30 minutes to feed, and then he can do things for the next hour and a half. Before, it would take at least an hour to get the "food" down, and then he'd have to nap for another hour or two just to feel better. He'd wake up, and it would immediately be time to feed again, and the cycle would start all over. He was miserable. But this new food really works for him. It's still not perfect, but compared to the other food, it is a godsend.
Unfortunately, the news on the swallowing front isn't as promising. We had a follow-up appointment with the gastrointestinal (GI) doctor a couple of weeks ago. Vic reported that swallowing hadn't improved much, and the GI doctor said they could dilate another 3 mm or so (which would be normal swallowing size), but that was about as far as they could go without risking damage. When I said, "As he continues to swallow, will that help? Like if you use your muscles, they get used to being used?" And he said, "Not really. That scar tissue will probably always cause his throat to want to close up, and we'll probably have to do throat dilations for the rest of whatever."
This was a real blow to Vic, and that's when he finally realized that his life may never be what it was before the cancer. (Damn cancer.) All this time, we were thinking that the recovery wll be slow, but when it's over, life will be the same. But no, it doesn't look that way. I think I would have used this as an excuse to take to my bed and feel sorry for myself for a week (or more), but it had the opposite effect on Vic. It made him more determined to take charge of his recovery. On one of our afternoon walks, he said "All this time, I've been waiting for the corner to come to me. Now I know that if I'm going to turn the corner, I'm going to have to walk there myself." He's been faithfully ingesting five cans a day, drinking as much other stuff as he can, and trying new things. We went to Tokyo Joe's the other day—he'd been craving California rolls—and he was able to eat three-and-a-half pieces out of the four he ordered! He is eating more soup when he makes it, and he is able to eat three jumbo shrimps at a time. Other things haven't been as successful, and some have been downright disappointing—but he keeps trying despite the disappointment. I am really, really proud of him.
Thanksgiving was only slightly disappointing. It's Vic's favorite holiday. He loves just visiting with our families, and of course, eating. But it's a very long day. Between his sisters and mine, it's an eight- to ten-hour day, which probably would have knocked him out for a week. And of course, it is an eating holiday, and even though things are getting better, they aren't getting that much better just yet. He would have had to feed three times from his stupid canned food while everyone around him was gorging themselves on the most delicious food in the world. So we didn't go out for Thanksgiving. But his wonderful sister Alice brought up the moistest turkey, the smoothest mashed potatoes and a vat of gravy the day before Thanksgiving, and that's what we had on Thanskgiving day. He wasn't able to eat a lot of it (besides the swallowing issue, his mouth is still so dry that it's hard to eat anything he has to chew, and don't get me started again on the mucous), but he said it sure did taste good. The day after Thanksgiving, his other wonderful sister Patty brought up more moist turkey, more mashed potatoes, the stuffing he had been craving, sweet potatoes and pumpkin pie. Again, he wasn't able to eat a lot of it, but he said it tasted delicious. His sisters sure do love him.
Next up (insert ominous music): the follow-up PET scan to determine whether the treatment worked. It's this Wednesday, and although our medical people seem very sure of themselves, we are starting to get a little nervous. Then he has a doctor's appointment with the radiation oncologist on Monday (12/12) to get the results. You will certainly get a post from me that day—either way.
Since it was just Thanksgiving, I want to take a quick moment to once again thank all our family and friends for all your support. I see little things here and there that tell me you are still thinking of us, and all your thoughts and prayers and healing energy are keeping us going every day.
I'd like to leave you this week with another picture of Wags (shocker). We started writing The Scallion this weekend. It's a little tricky to write this year because I've been blogging and I feel like I've used up all the good lines. But we think we have a good start. We should be able to finish it up next weekend (or weekEND, as my English friend Michelle would pronounce it), and you should see it in your mailboxes (or e-mail inboxes) the week after. Anyway, part of The Scallion is our annual holiday picture. Wags is getting really good at taking these pictures. She scoots into my lap pretty well, and she drops the ball practically on cue. But every once in a while, she gets a little excited that Dad is coming to join us at the tree, and this is the result:
Happy day—see ya back here in a week or so!
Sunday, November 6, 2011
The Swallowing Adventure Continues
I really thought I'd have time to write a post on Monday after Vic's enlargement procedure (no, not that kind of enlargement), and here it is Sunday again. Shocker.
OK, so, before Vic had his procedure, this is what he was using to shove pills down his throat:
(It's a shoehorn, for you youngsters who are like, "What?")
Then they sedated him and used this device to make his throat bigger:
(It's a shoe spreader—don't you young people know anything???)
Here's a paragraph for my medical friends—skip if you don't read "doctor." Normal duodenal folds were noted. The stomach was entered and closely examined. The antrum, angularis, and lesser curvature were well visualized, including a retroflexed view of the cardia and fundus. The stomac wall was normally distensable. The scope passed easily through the pylorus into the duodenum. PEG tube noted. A proximal esophageal stricture was not endoscopically visualized. Dilation with a 48 and 51 F Savary dilator was performed. Heme was noted on the 51 F dilator. The passage of the 51 F dilator was noted to have some resistance.
In English: His throat was smushed. They opened it up a little bit.
What's that? You want a little more detail? OK. The doctor put a scope down Vic's throat. Then the doctor put a wire through the scope and put a dilator (a device that apparently looks kind of like a carrot) over the wire and passed it down the throat to open it up a little bit. He opened it to 13 or 14 mm (a normal throat is about 20 mm). This is where Vic started bleeding (that's normal, not a big deal), so the doctor stopped. He said he would probably have to do the procedure again to open up Vic's throat even more.
Vic didn't have any adverse reactions to the procedure, so this week, he started trying to swallow things. Smooth things and things that melt (such as noodle soup broth, ice cream and sherbet, Jell-O, and V-8 juice) all went down smoothly and taste pretty good. Well, not the V-8 juice, but it's juice MADE OF VEGETABLES. What do you expect? Other things taste pretty good but don't go down so well—eggs, quesadillas, chips, meat. And he's still a little nervous about swallowing in general, so that doesn't help. But he's going to keep trying because he has two throat appointments this week (routine follow-ups), and he needs to be able to tell them what he can and can't swallow.
I feel like once he gets over this hurdle, the recovery is not just going to turn the corner but it's going to go hurtling down the hill so fast you won't even see the dust he leaves in his tracks. But right now, I just feel like we're in a freeze frame at the top of the hurdle—we can't get over it, and it's too late to go back. So I really hope they start rolling again. (That's a film reference, youngsters. See, in the olden days, about 20 years ago, they shot movies on this medium called "film," which was wound around ... oh, who cares? It's all digital now.)
And that's about all I have this week, devoted blog followers. Catch ya on the flip flop. (Look it up, young people. I'm not going to do all your work for you.) 10-4 good buddy.
OK, so, before Vic had his procedure, this is what he was using to shove pills down his throat:
(It's a shoehorn, for you youngsters who are like, "What?")
Then they sedated him and used this device to make his throat bigger:
(It's a shoe spreader—don't you young people know anything???)
Here's a paragraph for my medical friends—skip if you don't read "doctor." Normal duodenal folds were noted. The stomach was entered and closely examined. The antrum, angularis, and lesser curvature were well visualized, including a retroflexed view of the cardia and fundus. The stomac wall was normally distensable. The scope passed easily through the pylorus into the duodenum. PEG tube noted. A proximal esophageal stricture was not endoscopically visualized. Dilation with a 48 and 51 F Savary dilator was performed. Heme was noted on the 51 F dilator. The passage of the 51 F dilator was noted to have some resistance.
In English: His throat was smushed. They opened it up a little bit.
What's that? You want a little more detail? OK. The doctor put a scope down Vic's throat. Then the doctor put a wire through the scope and put a dilator (a device that apparently looks kind of like a carrot) over the wire and passed it down the throat to open it up a little bit. He opened it to 13 or 14 mm (a normal throat is about 20 mm). This is where Vic started bleeding (that's normal, not a big deal), so the doctor stopped. He said he would probably have to do the procedure again to open up Vic's throat even more.
Vic didn't have any adverse reactions to the procedure, so this week, he started trying to swallow things. Smooth things and things that melt (such as noodle soup broth, ice cream and sherbet, Jell-O, and V-8 juice) all went down smoothly and taste pretty good. Well, not the V-8 juice, but it's juice MADE OF VEGETABLES. What do you expect? Other things taste pretty good but don't go down so well—eggs, quesadillas, chips, meat. And he's still a little nervous about swallowing in general, so that doesn't help. But he's going to keep trying because he has two throat appointments this week (routine follow-ups), and he needs to be able to tell them what he can and can't swallow.
I feel like once he gets over this hurdle, the recovery is not just going to turn the corner but it's going to go hurtling down the hill so fast you won't even see the dust he leaves in his tracks. But right now, I just feel like we're in a freeze frame at the top of the hurdle—we can't get over it, and it's too late to go back. So I really hope they start rolling again. (That's a film reference, youngsters. See, in the olden days, about 20 years ago, they shot movies on this medium called "film," which was wound around ... oh, who cares? It's all digital now.)
And that's about all I have this week, devoted blog followers. Catch ya on the flip flop. (Look it up, young people. I'm not going to do all your work for you.) 10-4 good buddy.
Sunday, October 30, 2011
The Swallowing Adventure
If you remember last week's lame blog entry, you may remember that I promised pictures, so here we go.
First, Bryan was here for a visit. Here are my men together:
Vic's family came up to visit Bryan. Vic's sister Alice brought a lovely tart:
Vic's sister Patty brought delicious cupcakes:
Vic was his usual selfless self, foregoing these treats to make sure there was enough for the rest of the family. However, he did have his regular lunch, which he thoroughly enjoyed. Much more than he would have enjoyed the tart or the cupcakes. Much more. Mhm.
This is about as close to pouty as he ever gets. Poor baby.
In addition to promising pictures, I also mentioned his endoscopy. So what could be better than a picture of him at his endoscopy?!
Don't worry, peeps, he was just mugging for the camera. He wasn't really nervous. ;-)
And here he is after:
Pretty much the same; maybe a bit less perky.
I also mentioned the barium swallow on last week's blog. So that happened on Wednesday this week. It was awful. Not for me, because I was just in the waiting room. But Vic said it was one of the worst procedures he's ever had, and let's remember that he lost a kidney 15 years ago, had an angiogram seven years ago and died last year. The doctor wanted him to take a pill. A pill! The same evil contraption that nearly choked him to death a couple of weeks ago! He warned the doctor, "Uh, this isn't going to work." And they said, "Well, take it anyway." So he did, and guess what happened? You can't? You're not trying hard enough. That's right. It got stuck. Now, except for the fact that he had a pill lodged in his throat, this was actually a lot of fun for Vic as he watched the medical community kick into high gear trying to find something to help him get the pill unstuck. And the upside to all of this is that he was vindicated—the pill got stuck while someone was watching, and now he doesn't have to feel like a hypochondriac.
The doctor's office called us the next day to tell us the official results: there is a narrowing of the throat that is causing pills to get stuck. And what did they want Vic to do? Another barium swallow. That's right. Another of the worst procedure he's ever had. Fortunately, they made it very clear this time there would be no pill involved.
So I called over to get it scheduled. This was on Thursday, October 27. "The first available appointment we have is November 9," the scheduler said. I deflated. Now we know there is an obstruction, and we have to wait for two weeks to get it taken care of? So I put on my best disappointed voice—which did not take much effort—and said, "Oh, really?" "Yeah," she said, "the speech therapist only has one appointment a day, and she's booked until then." "Oh," I said, continuing with my disappointed voice. "I see. Well, maybe you could call us if there is a cancellation? My husband can't swallow, you see, and the only thing in the way of his getting rid of his feeding tube is the ability to swallow."
The scheduler took pity on my and must have taken my sob story to the speech therapist, because she called back a few hours later and asked if we could do it the next day. Normally the speech therapist is off on Fridays, but she was going to be in for some other reason and agreed to give Vic his test. And once we got that swallow study scheduled, we were able to schedule another procedure with the gastrointestinal (GI) doctor on Monday (more on that later), which is great, because after that, the GI doctor goes on some sort of vacation (can you imagine?) and isn't available until November 11.
Vic's second barium swallow was much less traumatic than the first, and he got to see a video of his swallowing. It was extremely cool because it was an X-ray video, and he was wearing his glasses. So he looked like a skeleton wearing glasses and drinking stuff. Ummm, OK, it was much cooler than it sounds. Anyway, the kind and flexible speech therapist showed us all the things that were going on:
Now, about that second procedure—he's having another upper endoscopy tomorrow, but where the last one was exploratory, this one is a treatment. They're going to do a dilation and try to open up his throat. This is awesome news, but of course, it is a little scary. So please be thinking of him tomorrow at 11. (Don't think about me; I'm not having a procedure. I'll just be in the waiting room. Send all your thoughts to him!)
So what are we looking at now? Well, the corner is still a long way away, but he is marching inexorably toward it. (Not really. He's baby-stepping toward it, but "marching inexorably" makes me sound smart, and let's face it: this blog is all about me.) Because a lot of good taste is coming back, we are hoping tomorrow's dilation allows him to swallow more than just Jell-O and ... well, Jell-O. The sooner he can swallow, the sooner he can get off those [insert long string of adjectival curse words here] cans of "food." They make him nauseated all day long every day, which pretty much makes him unable to do anything but recover in between feedings. [Insert long string of adjectival curse words here] "food"!!!!! If he can do that, then he'll be at the corner before you can say "Bob's your uncle." Or maybe "Bob's your uncle who farts a lot at Thanksgiving and always gets drunk and tells secrets that were much better left untold."
So that's my much longer, much more informative and (hopefully) slightly more entertaining update for the week.
I often like to leave you with a picture of Vic and Wags, and I happen to have a really good one:
First, Bryan was here for a visit. Here are my men together:
Vic's family came up to visit Bryan. Vic's sister Alice brought a lovely tart:
Vic's sister Patty brought delicious cupcakes:
Vic was his usual selfless self, foregoing these treats to make sure there was enough for the rest of the family. However, he did have his regular lunch, which he thoroughly enjoyed. Much more than he would have enjoyed the tart or the cupcakes. Much more. Mhm.
This is about as close to pouty as he ever gets. Poor baby.
In addition to promising pictures, I also mentioned his endoscopy. So what could be better than a picture of him at his endoscopy?!
Don't worry, peeps, he was just mugging for the camera. He wasn't really nervous. ;-)
And here he is after:
Pretty much the same; maybe a bit less perky.
I also mentioned the barium swallow on last week's blog. So that happened on Wednesday this week. It was awful. Not for me, because I was just in the waiting room. But Vic said it was one of the worst procedures he's ever had, and let's remember that he lost a kidney 15 years ago, had an angiogram seven years ago and died last year. The doctor wanted him to take a pill. A pill! The same evil contraption that nearly choked him to death a couple of weeks ago! He warned the doctor, "Uh, this isn't going to work." And they said, "Well, take it anyway." So he did, and guess what happened? You can't? You're not trying hard enough. That's right. It got stuck. Now, except for the fact that he had a pill lodged in his throat, this was actually a lot of fun for Vic as he watched the medical community kick into high gear trying to find something to help him get the pill unstuck. And the upside to all of this is that he was vindicated—the pill got stuck while someone was watching, and now he doesn't have to feel like a hypochondriac.
The doctor's office called us the next day to tell us the official results: there is a narrowing of the throat that is causing pills to get stuck. And what did they want Vic to do? Another barium swallow. That's right. Another of the worst procedure he's ever had. Fortunately, they made it very clear this time there would be no pill involved.
So I called over to get it scheduled. This was on Thursday, October 27. "The first available appointment we have is November 9," the scheduler said. I deflated. Now we know there is an obstruction, and we have to wait for two weeks to get it taken care of? So I put on my best disappointed voice—which did not take much effort—and said, "Oh, really?" "Yeah," she said, "the speech therapist only has one appointment a day, and she's booked until then." "Oh," I said, continuing with my disappointed voice. "I see. Well, maybe you could call us if there is a cancellation? My husband can't swallow, you see, and the only thing in the way of his getting rid of his feeding tube is the ability to swallow."
The scheduler took pity on my and must have taken my sob story to the speech therapist, because she called back a few hours later and asked if we could do it the next day. Normally the speech therapist is off on Fridays, but she was going to be in for some other reason and agreed to give Vic his test. And once we got that swallow study scheduled, we were able to schedule another procedure with the gastrointestinal (GI) doctor on Monday (more on that later), which is great, because after that, the GI doctor goes on some sort of vacation (can you imagine?) and isn't available until November 11.
Vic's second barium swallow was much less traumatic than the first, and he got to see a video of his swallowing. It was extremely cool because it was an X-ray video, and he was wearing his glasses. So he looked like a skeleton wearing glasses and drinking stuff. Ummm, OK, it was much cooler than it sounds. Anyway, the kind and flexible speech therapist showed us all the things that were going on:
- He definitely has a narrowing of the throat. She thinks it is scar tissue from the radiation.
- He is getting a little liquid stuck in his epiglottus (no, I am not going to look up how to spell that at 9:30 on a Sunday night), which then trickles down his airway.
- He is getting a little liquid trickling down his airway even without the epiglottus (no, I'm still not looking it up) situation.
- Then he is getting a little liquid on his vocal chords, which is causing his raspy voice.
Now, about that second procedure—he's having another upper endoscopy tomorrow, but where the last one was exploratory, this one is a treatment. They're going to do a dilation and try to open up his throat. This is awesome news, but of course, it is a little scary. So please be thinking of him tomorrow at 11. (Don't think about me; I'm not having a procedure. I'll just be in the waiting room. Send all your thoughts to him!)
So what are we looking at now? Well, the corner is still a long way away, but he is marching inexorably toward it. (Not really. He's baby-stepping toward it, but "marching inexorably" makes me sound smart, and let's face it: this blog is all about me.) Because a lot of good taste is coming back, we are hoping tomorrow's dilation allows him to swallow more than just Jell-O and ... well, Jell-O. The sooner he can swallow, the sooner he can get off those [insert long string of adjectival curse words here] cans of "food." They make him nauseated all day long every day, which pretty much makes him unable to do anything but recover in between feedings. [Insert long string of adjectival curse words here] "food"!!!!! If he can do that, then he'll be at the corner before you can say "Bob's your uncle." Or maybe "Bob's your uncle who farts a lot at Thanksgiving and always gets drunk and tells secrets that were much better left untold."
So that's my much longer, much more informative and (hopefully) slightly more entertaining update for the week.
I often like to leave you with a picture of Vic and Wags, and I happen to have a really good one:
Have a good week, everyone, and I'll catch up with you as soon as I can!
Sunday, October 23, 2011
Quick and Dirty Update
So, I want the blog to be entertaining, but mostly, it's about disseminating information. So since I skipped last week's post, and this week I'm too tired to make it entertaining, I'll do a little Jack Webb: Just the facts, ma'am.
Sorry for the lame post, but at least you're updated. :-)
- I'm sure we all remember the good news from the last blog post—taste is back.
- Well la dee freakin' da—swallowing is not. That's right. Now that food tastes good, he can't swallow it. In fact, this week, he got a pill—a tiny little pill—stuck in his throat and he felt like he was going to choke to death.
- The ear, nose and throat (ENT) doctor said he should go to a gastrointestinal (GI) doctor to open up his throat. Our regular doctor agreed, so Vic had an upper GI endoscopy procedure done on Friday. Unfortunately, they didn't find any constriction in the throat. There was a little inflammation in the stomach and esophagus, so the GI doctor prescribed him a Prilosec-like drug in a powdered form (since it was the Prilosec that got stuck in Vic's throat). Also, he will be having a "barium swallow" on Wednesday to see if they can see anything wrong with the swallowing mechanism. He might need a little swallowing therapy. We'll see.
Sorry for the lame post, but at least you're updated. :-)
Monday, October 10, 2011
Here Comes the Sun
Here comes the sun, doo doo doo doo,
Here comes the sun, and I say,
It's all right.
And besides beautiful sunflowers from a friend (thanks, Linnae!), nothing says "sunshine" more than a recovering spouse.
So let's get to it!
What's still bad this week? Well, sure—the mucous. Plus he's having one or two coughing fits a day that are like coughing up a lung. And although most pain is gone, the pain that remains is so far down his throat that existing pain medications can't reach it. What about the Vicodin, I hear you ask. Well, the Vicodin is a really, really, really big pill that's hard to swallow, so it's not working out so well. And finally, there's still an overall feeling of malaise—just an "I may be feeling better than before, but I'm tired of not feeling good" feeling. I know. That's a lot of feelings.
But what's good this week? Taste. That's right, folks, you heard it here first. I said taste. TASTE. No, it's not perfect, but it's a pretty big baby step. I went to Atlanta for a few days earlier this week and brought home some pralines—always a Love Shack favorite. I handed him a small bite. He gingerly put it to his lips and took a bite. And ... and ... not only did it not taste horrible, but it actually tasted good! Now swallowing—that's another story. He couldn't swallow the praline very well. It got hung up in (what's that, Liz? You know the answer already?), that's right, the mucous. Same with the oatmeal he tried the next morning. But he did drink a whole can of Pepsi the day I came home, and now he's trying other new things. Last night:
Vegetable soup! No, it's not what I would have tried for my first foray into food, but I don't suppose bun-burger-cheese-bun would have been advisable. Anyway, no he did not eat that whole bowl, but he ate some, and it wasn't disgusting. Then he tried some ice cream. Guess what? Yummy! And he drank another whole can of Pepsi! This morning, a bite of banana (yum) and a bite of apple (yum, but stuck in the throat, so no thank you).
So taste is coming back, and we're really grateful for that, but it's just a baby step. Swallowing is still an issue, and reintroducing food into a tummy that's had only an Ensure-like substance in it since July is dicey. So we're not booking a table at the Flagstaff House just yet. But Thanksgiving is looking more promising.
Now I know many of you are clinging to the edge of your seats wondering what is up with Wags? Well, Wags is doing her normal Wagsian thing, which is to say waiting for someone to throw the ball.
Also, she is really excited to report that she got a new toy this week: Snakey!
Snakey has already made friends with Ball. And yes, Snakey's squeezy noise thingy has already been destroyed. It's the first thing Wags does with a new toy—make the noisy part go away.
So the week—well, it turned cold here, but we are still warmed by the love of friends and family, each other, and Snakey.
Sun, sun, sun, here it comes.
Here comes the sun, and I say,
It's all right.
And besides beautiful sunflowers from a friend (thanks, Linnae!), nothing says "sunshine" more than a recovering spouse.
So let's get to it!
What's still bad this week? Well, sure—the mucous. Plus he's having one or two coughing fits a day that are like coughing up a lung. And although most pain is gone, the pain that remains is so far down his throat that existing pain medications can't reach it. What about the Vicodin, I hear you ask. Well, the Vicodin is a really, really, really big pill that's hard to swallow, so it's not working out so well. And finally, there's still an overall feeling of malaise—just an "I may be feeling better than before, but I'm tired of not feeling good" feeling. I know. That's a lot of feelings.
But what's good this week? Taste. That's right, folks, you heard it here first. I said taste. TASTE. No, it's not perfect, but it's a pretty big baby step. I went to Atlanta for a few days earlier this week and brought home some pralines—always a Love Shack favorite. I handed him a small bite. He gingerly put it to his lips and took a bite. And ... and ... not only did it not taste horrible, but it actually tasted good! Now swallowing—that's another story. He couldn't swallow the praline very well. It got hung up in (what's that, Liz? You know the answer already?), that's right, the mucous. Same with the oatmeal he tried the next morning. But he did drink a whole can of Pepsi the day I came home, and now he's trying other new things. Last night:
Vegetable soup! No, it's not what I would have tried for my first foray into food, but I don't suppose bun-burger-cheese-bun would have been advisable. Anyway, no he did not eat that whole bowl, but he ate some, and it wasn't disgusting. Then he tried some ice cream. Guess what? Yummy! And he drank another whole can of Pepsi! This morning, a bite of banana (yum) and a bite of apple (yum, but stuck in the throat, so no thank you).
So taste is coming back, and we're really grateful for that, but it's just a baby step. Swallowing is still an issue, and reintroducing food into a tummy that's had only an Ensure-like substance in it since July is dicey. So we're not booking a table at the Flagstaff House just yet. But Thanksgiving is looking more promising.
Now I know many of you are clinging to the edge of your seats wondering what is up with Wags? Well, Wags is doing her normal Wagsian thing, which is to say waiting for someone to throw the ball.
Also, she is really excited to report that she got a new toy this week: Snakey!
Snakey has already made friends with Ball. And yes, Snakey's squeezy noise thingy has already been destroyed. It's the first thing Wags does with a new toy—make the noisy part go away.
So the week—well, it turned cold here, but we are still warmed by the love of friends and family, each other, and Snakey.
Sun, sun, sun, here it comes.
Saturday, October 1, 2011
The View
Last week, Vic went to the store for some medicine and he asked if I needed anything. I knew he wanted me to say "no," but I definitely needed something. I started writing on a sticky note, and writing and writing and writing, and I knew he was probably getting a little frustrated. Like, "I'm tired, and all I want to do is get my medicine. I can't be hopping all around the store to get you Twizzlers and shaving cream."
I handed him the sticky note.
He laughed and said he would like that too. And even though he couldn't find the cure in a jar at the Safeway, he did find that some things improved this week:
But perhaps you will notice what has not improved:
Also, we saw the ear, nose and throat doctor this week. Vic had had some pox-like thingies (the technical term) in his mouth that the radiation oncologist hadn't seen before, so she sent him to the ENT. By the time he got in, the pox-like thingies were gone, but the doctor took a look anyway. This conversation went something like this:
DOCTOR: Wow. You have a pretty bad case of mucousitis.
VIC: Yeah.
DOCTOR: Yeah, we can't do anything about that.
DOCTOR: It says on your form that you're having trouble swallowing. That's too bad. There's nothing we can really do about that.
DOCTOR: Are you still on the tube?
VIC: Yeah, I can't really taste anything.
DOCTOR: Yeah, that's going to take awhile. Six to twelve months, probably. Sucks to be you.
Then he put his headlamp on and took a look down Vic's throat. He commented again on the mucousitis and how he didn't have anything for that, and then he said, "Well, the good news is I can't see the cancer anymore."
(See, he buried the lead, so so did I.)
Now I know that it exciting news—pretreatment, you could see the little tumor sticking its ugly little head out. Now you can't. But remember, the cancer was pretty far down in the throat, so just because he can't see it doesn't mean it's gone. Still, we were pretty excited about that, and the ENT agreed with the two oncologists that he expected the treatment to have done what it was supposed to do, thus completing the medical professional trifecta of good news.
And I hate to keep bringin' ya down, but just when we thought we'd been through the worst (insert foreboding music here) ... the bills started coming. As Vic said, "Now comes the really hard part—paying for it." ;-)
So all in all, a good week. I know you're all wondering—how's the corner lookin'? Well, as you know, last week, it still seemed a long way off. Earlier this week, in preparation for today's blog post, I asked, "Do you feel like you're closer to the corner?" He said, "A little." I said, "Our loyal readers will want to know how much closer—one step? Two?" He said, "Oh, no, much closer than that. Two-and-a-half steps."
You heard it here first, folks: two-and-a-half steps closer to the corner. I like that view.
Here are a few more views I like.
Me and Vic outside my mother's apartment:
Vic and Wags playing ball:
Vic and Wags still playing ball:
(I have about 18 more of those, so I'll spare you. Suffice it to say that Vic and Wags play a lot of ball.)
And finally, our new rock garden planted by the lady I hired to weed.
All I wanted initially was for her to weed and maybe give us a little planting advice. Oh, she weeded all right. It would have taken us forever to do what she did in just a few hours. And then we looked at the areas we wanted to plant. She gave us some really great ideas, all of which started with the need to reconstitute some soil in our back yard. And this required some relocating of some plants. And as she was relocating some plants, she saw this barren area that we had never gotten anything to grow in. We tried garlic. We tried cucumbers. We tried tulips. Nothing worked. But she thought if we just took a few of the chicks and hens that our friends Larry and Paulette had given us and put them in this area, surrounded by a few rocks from other parts of the yard, it would look nice, and she was right. We adored it. But she thought it still looked a little spare, so she brought a few of her own chicks and hens that were different from ours and planted them in this area as well. She was right again, and the result is this beautiful, tranquil little area. We love it, and we love her. If you need weeding or gardening help, please let me know and I will send you her way.
Have a great week, everyone, and I'll catch up with you all next week, when I hope Vic will be a few more steps closer to the corner—even if they are the baby steps he says they were this week.
THANK YOU FOR YOUR CONTINUED SUPPORT! (Yes, I was shouting. I'm very emphatic about my thanks.)
I handed him the sticky note.
He laughed and said he would like that too. And even though he couldn't find the cure in a jar at the Safeway, he did find that some things improved this week:
- The mucous is a little less mucousy
- The pain is a little less painful—so much so that he has stopped taking his pain medication
- The redness/sunburn in his throat area has peeled and he now looks normal in that area.
- The fatigue is a little less tiring—he is not taking as many naps
- The whisper voice has become the froggy voice
But perhaps you will notice what has not improved:
- Taste. He is still not enjoying food at all. Although he has had a spoon of chicken soup that didn't disgust him, and a spoon of Jell-O that wasn't the worst thing in the world, he had a spoon of his beloved lemon pudding that was just gross. Still waiting "patiently." And yes, those quotation marks are necessary.
- In addition, he is having great difficulty swallowing pills, which is a new symptom (I guess you can't have it all, eh?), and he is coughing and sneezing a lot more.
Also, we saw the ear, nose and throat doctor this week. Vic had had some pox-like thingies (the technical term) in his mouth that the radiation oncologist hadn't seen before, so she sent him to the ENT. By the time he got in, the pox-like thingies were gone, but the doctor took a look anyway. This conversation went something like this:
DOCTOR: Wow. You have a pretty bad case of mucousitis.
VIC: Yeah.
DOCTOR: Yeah, we can't do anything about that.
DOCTOR: It says on your form that you're having trouble swallowing. That's too bad. There's nothing we can really do about that.
DOCTOR: Are you still on the tube?
VIC: Yeah, I can't really taste anything.
DOCTOR: Yeah, that's going to take awhile. Six to twelve months, probably. Sucks to be you.
Then he put his headlamp on and took a look down Vic's throat. He commented again on the mucousitis and how he didn't have anything for that, and then he said, "Well, the good news is I can't see the cancer anymore."
(See, he buried the lead, so so did I.)
Now I know that it exciting news—pretreatment, you could see the little tumor sticking its ugly little head out. Now you can't. But remember, the cancer was pretty far down in the throat, so just because he can't see it doesn't mean it's gone. Still, we were pretty excited about that, and the ENT agreed with the two oncologists that he expected the treatment to have done what it was supposed to do, thus completing the medical professional trifecta of good news.
And I hate to keep bringin' ya down, but just when we thought we'd been through the worst (insert foreboding music here) ... the bills started coming. As Vic said, "Now comes the really hard part—paying for it." ;-)
So all in all, a good week. I know you're all wondering—how's the corner lookin'? Well, as you know, last week, it still seemed a long way off. Earlier this week, in preparation for today's blog post, I asked, "Do you feel like you're closer to the corner?" He said, "A little." I said, "Our loyal readers will want to know how much closer—one step? Two?" He said, "Oh, no, much closer than that. Two-and-a-half steps."
You heard it here first, folks: two-and-a-half steps closer to the corner. I like that view.
Here are a few more views I like.
Me and Vic outside my mother's apartment:
Vic and Wags playing ball:
Vic and Wags still playing ball:
(I have about 18 more of those, so I'll spare you. Suffice it to say that Vic and Wags play a lot of ball.)
And finally, our new rock garden planted by the lady I hired to weed.
All I wanted initially was for her to weed and maybe give us a little planting advice. Oh, she weeded all right. It would have taken us forever to do what she did in just a few hours. And then we looked at the areas we wanted to plant. She gave us some really great ideas, all of which started with the need to reconstitute some soil in our back yard. And this required some relocating of some plants. And as she was relocating some plants, she saw this barren area that we had never gotten anything to grow in. We tried garlic. We tried cucumbers. We tried tulips. Nothing worked. But she thought if we just took a few of the chicks and hens that our friends Larry and Paulette had given us and put them in this area, surrounded by a few rocks from other parts of the yard, it would look nice, and she was right. We adored it. But she thought it still looked a little spare, so she brought a few of her own chicks and hens that were different from ours and planted them in this area as well. She was right again, and the result is this beautiful, tranquil little area. We love it, and we love her. If you need weeding or gardening help, please let me know and I will send you her way.
Have a great week, everyone, and I'll catch up with you all next week, when I hope Vic will be a few more steps closer to the corner—even if they are the baby steps he says they were this week.
THANK YOU FOR YOUR CONTINUED SUPPORT! (Yes, I was shouting. I'm very emphatic about my thanks.)
Sunday, September 25, 2011
Nothin' New
Yeah, so, the blog? It's supposed to be a way to update you all on how things are going with us all. But what do I write about when nothing has really changed?
Pain? Still there. Mucous? Still there. Taste? Still not there. Feeding tube? Yeah. Totally still there.
Oh, and that corner from Monday? Still a long way away.
And yet, we're doing fine. We have our families. We have our friends. We have Wags. But most of all, we have each other.
If we are strong, it's because we have each other. If we are facing this with humor, grace, optimism, it's because we have each other. When I am down, he picks me up. When he is down, I hammer him about how he needs to feed and hydrate more. OK, maybe sometimes I pick him up too. I may not always know how he feels—those of you who know him know he's the strong, silent type—but I always know that holding his hand or rubbing his back or giving him my lap to lay his head in will make him feel better. And he knows that just putting his arms around me will make me feel better.
So yeah, we're doing fine. Better than fine, actually. We have each other.
Pain? Still there. Mucous? Still there. Taste? Still not there. Feeding tube? Yeah. Totally still there.
Oh, and that corner from Monday? Still a long way away.
And yet, we're doing fine. We have our families. We have our friends. We have Wags. But most of all, we have each other.
If we are strong, it's because we have each other. If we are facing this with humor, grace, optimism, it's because we have each other. When I am down, he picks me up. When he is down, I hammer him about how he needs to feed and hydrate more. OK, maybe sometimes I pick him up too. I may not always know how he feels—those of you who know him know he's the strong, silent type—but I always know that holding his hand or rubbing his back or giving him my lap to lay his head in will make him feel better. And he knows that just putting his arms around me will make me feel better.
So yeah, we're doing fine. Better than fine, actually. We have each other.
Monday, September 19, 2011
Recovery Week 3: "I can see it from here"
This just in:
"I haven't quite turned the corner yet, but I think I can see it from here."
—Victor Love via Facebook
"I haven't quite turned the corner yet, but I think I can see it from here."
—Victor Love via Facebook
Sunday, September 18, 2011
Recovery Week 2: SSDD
Let's put the good news up front this week. The NotChemo oncologist agreed with the radiation oncologist: He expects this treatment to do the trick and that the PET scan will show up clean.
Can I get a WOO and a HOO?!?!?!
And right now, the promise of a clean PET scan is going to have to do, because everything else is the same. And it's going to be the same for a little while longer because even though he's no longer in treatment, damage is still being done. As the radiation oncologist said, the reason you can't get a PET scan for a few months is that the radiation is still working on the cancer. Well, what occurred to us this week was that if the radiation is still working on the cancer, it's still working on the healthy tissue as well. Once the radiation has done its job, the cancer will die, and the healthy cells will start to regenerate. And that's when I expect a resurgence from my sweet baboo.
So that's what I'm clinging to. Last week, you may recall, my blog post was a little bit of a downer. But since then, I've been reminded by my friends and family—that's you guys—that I am strong. I am optimistic. I am resilient. It started with a poem sent to me by my a friend whose husband went through a very similar cancer scenario last year (and just had a totally clean PET!). It continued when a friend of mine with breast cancer went through her surgery successfully—and maintained her sense of humor throughout the ordeal. It was prolonged by your daily Facebook messages and blog comments. It spiked up when I found out I was going to be a grandma—again—and that my niece joined my nephew in getting engaged. And then it was cemented by a timely card from a dear friend saying that she believed in me.
So for anyone who is struggling this week with your own challenges—and I imagine that's most of you in one way or another—let me start your week with the poem from my friend Liz. I wish you hope, strength, encouragement and sunlight.
The Word
By Tony Hoagland
Down near the bottom
of the crossed-out list
of things you have to do today,
between “green thread”
and “broccoli” you find
that you have penciled “sunlight.”
Resting on the page, the word
is as beautiful, it touches you
as if you had a friend
and sunlight were a present
he had sent you from some place distant
as this morning—to cheer you up,
and to remind you that,
among your duties, pleasure
is a thing,
that also needs accomplishing
Do you remember?
that time and light are kinds
of love, and love
is no less practical
than a coffee grinder
or a safe spare tire?
Tomorrow you may be utterly
without a clue
but today you get a telegram,
from the heart in exile
proclaiming that the kingdom
still exists,
the king and queen alive,
still speaking to their children,
—to any one among them
who can find the time,
to sit out in the sun and listen.
Can I get a WOO and a HOO?!?!?!
And right now, the promise of a clean PET scan is going to have to do, because everything else is the same. And it's going to be the same for a little while longer because even though he's no longer in treatment, damage is still being done. As the radiation oncologist said, the reason you can't get a PET scan for a few months is that the radiation is still working on the cancer. Well, what occurred to us this week was that if the radiation is still working on the cancer, it's still working on the healthy tissue as well. Once the radiation has done its job, the cancer will die, and the healthy cells will start to regenerate. And that's when I expect a resurgence from my sweet baboo.
So that's what I'm clinging to. Last week, you may recall, my blog post was a little bit of a downer. But since then, I've been reminded by my friends and family—that's you guys—that I am strong. I am optimistic. I am resilient. It started with a poem sent to me by my a friend whose husband went through a very similar cancer scenario last year (and just had a totally clean PET!). It continued when a friend of mine with breast cancer went through her surgery successfully—and maintained her sense of humor throughout the ordeal. It was prolonged by your daily Facebook messages and blog comments. It spiked up when I found out I was going to be a grandma—again—and that my niece joined my nephew in getting engaged. And then it was cemented by a timely card from a dear friend saying that she believed in me.
So for anyone who is struggling this week with your own challenges—and I imagine that's most of you in one way or another—let me start your week with the poem from my friend Liz. I wish you hope, strength, encouragement and sunlight.
The Word
By Tony Hoagland
Down near the bottom
of the crossed-out list
of things you have to do today,
between “green thread”
and “broccoli” you find
that you have penciled “sunlight.”
Resting on the page, the word
is as beautiful, it touches you
as if you had a friend
and sunlight were a present
he had sent you from some place distant
as this morning—to cheer you up,
and to remind you that,
among your duties, pleasure
is a thing,
that also needs accomplishing
Do you remember?
that time and light are kinds
of love, and love
is no less practical
than a coffee grinder
or a safe spare tire?
Tomorrow you may be utterly
without a clue
but today you get a telegram,
from the heart in exile
proclaiming that the kingdom
still exists,
the king and queen alive,
still speaking to their children,
—to any one among them
who can find the time,
to sit out in the sun and listen.
Saturday, September 10, 2011
Recovery Week 1: What Recovery?
Much like the economy, experts say we are in recovery. But also like the economy, it doesn't feel like we're in a recovery. It seems to me that a recovery would bring reduced pain. Diminished mucous. Improved taste. Less fatigue. But none of these are in evidence.
A typical day goes like this:
But now the blog is starting to sound like The Scallion, so let's get on with the update.
This week he had a one-week posttreatment appointment with the radiation oncologist. She said she was surprised (but pleased) that he hadn't lost any weight over the previous week. Most people do, without the radiation staff harping on it all the time. I said, "Most people don't live with Atilla the Hun." We smiled at each other, and she laughed. She said he looked great and that he really came through the treatment like a trouper and that he should just keep doing what he's been doing.
He mentioned how disappointed he was that he wasn't feeling even one iota better, and she just gave him that "I just cured you of cancer, you ungrateful pig" look and said, "Yeah."
The one thing she said that was super encouraging was that she believes this treatment did the trick. That when he goes in for his PET scan in two months and three weeks, she expects it to be clear. No cancer. No surgery indicated. No additional treatments. That was fantastic news.
So this week, he sees the NotChemo oncologist for a "routine" follow-up, and then I think the next thing will be the PET scan. Oh, I know what you're thinking. "Won't the next thing be getting his feeding tube out?" Oh, no, my dear readers. The radiation oncologist said she thought it would be four to six months yet that he'd be on the tube. Eventually his taste will return, yes, and he'll start eating again. But he will need to be off the tube 100 percent (that is, getting no sustenance through the tube at all) for two weeks—with no weight loss. When that happens, he will be able to get the tube out. That was not fantastic news.
The cancer giveth, and the cancer taketh away.
A typical day goes like this:
- Get up, take the dog for a walk, feed, nap for an hour or two.
- Get up, take some medication, cough up a lung.
- Feed, nap for an hour or two.
- Get up, play a game on the iPad or watch some TV.
- Feed, nap for an hour or two.
- Wait for me to come home or finish work.
- Feed, take the dog for a walk, whisper out a conversation.
- Prepare for bed: Take some medication, cough up the other lung, string out the oxygen, put on the bite guard.
- Sleep.
But now the blog is starting to sound like The Scallion, so let's get on with the update.
This week he had a one-week posttreatment appointment with the radiation oncologist. She said she was surprised (but pleased) that he hadn't lost any weight over the previous week. Most people do, without the radiation staff harping on it all the time. I said, "Most people don't live with Atilla the Hun." We smiled at each other, and she laughed. She said he looked great and that he really came through the treatment like a trouper and that he should just keep doing what he's been doing.
He mentioned how disappointed he was that he wasn't feeling even one iota better, and she just gave him that "I just cured you of cancer, you ungrateful pig" look and said, "Yeah."
The one thing she said that was super encouraging was that she believes this treatment did the trick. That when he goes in for his PET scan in two months and three weeks, she expects it to be clear. No cancer. No surgery indicated. No additional treatments. That was fantastic news.
So this week, he sees the NotChemo oncologist for a "routine" follow-up, and then I think the next thing will be the PET scan. Oh, I know what you're thinking. "Won't the next thing be getting his feeding tube out?" Oh, no, my dear readers. The radiation oncologist said she thought it would be four to six months yet that he'd be on the tube. Eventually his taste will return, yes, and he'll start eating again. But he will need to be off the tube 100 percent (that is, getting no sustenance through the tube at all) for two weeks—with no weight loss. When that happens, he will be able to get the tube out. That was not fantastic news.
The cancer giveth, and the cancer taketh away.
Tuesday, August 30, 2011
Radiation Day 35: Let the Healing Begin!
Today was radiation day 35. The last day. No more treatments. Not one. Uh-uh. Nope. Zero. Zilch. Nada. And not a moment too soon, because poor Vic—still trying to be as positive as ever—has been feeling worse than ever these past couple of days. So while this next week may still suck, at least nothing more will be adding to the suckitude.
So after Vic's LAST treatment (did I mention today was the last day?) and doctor visit, he was invited to "ring the bell."
He's known about the bell-ringing ceremony for quite some time, so he had been thinking about what he wanted to do. He rang the bell loud and clear. Paused for dramatic effect. He rang the bell again. Pause. He rang the bell again. It was very cinematic, and afterward I cursed myself for not bring the Flip video. Will you settle for a picture?
The staff all applauded resoundingly and said he had done an excellent job with the bell ringing, then posed with him for a picture.
Vic does have a way with the ladies, and these ladies were big fans. They were all super proud of him and said he had come throug the whole experience amazingly.
This lady is pretty proud of him too:
I couldn't ask for a better husband—or a better role model for how to handle adversity. :-)
So after Vic's LAST treatment (did I mention today was the last day?) and doctor visit, he was invited to "ring the bell."
He's known about the bell-ringing ceremony for quite some time, so he had been thinking about what he wanted to do. He rang the bell loud and clear. Paused for dramatic effect. He rang the bell again. Pause. He rang the bell again. It was very cinematic, and afterward I cursed myself for not bring the Flip video. Will you settle for a picture?
The staff all applauded resoundingly and said he had done an excellent job with the bell ringing, then posed with him for a picture.
Vic does have a way with the ladies, and these ladies were big fans. They were all super proud of him and said he had come throug the whole experience amazingly.
This lady is pretty proud of him too:
So, just a reminder as to next steps:
- Potentially feel like crap for a week.
- See radiation oncologist next week for a follow-up.
- See NotChemo oncologist in two weeks for a follow-up.
- Start to feel better. Eat food. Watch an entire movie without napping.
- Get PET scan to see how effective the treatment was in three months.
Thursday, August 25, 2011
The Q&A
OK, our interactive topic for this week (thanks for all your Mad Libs last week!) is a Q&A. Do you have any questions that haven't been answered on the blog? On Facebook? In person? On e-mail? By smoke signals? If so, feel free to send them to me at thegrammarqueen@msn.com, and I'll post 'em here for all to see. No topic is off limits—although some questions might be deemed ... unsuitable for a public reply. For example, questions about poop. (Yes, people ask about poop.) In cases such as that, I'll respond personally. I'm on vacation until August 31 (can I get a WOO and a HOO?!!), so I have plenty of time.
Let the interrogation begin!
Let the interrogation begin!
NotChemo Day 7: THE END OF ERBITUX!
Yesterday was a great day—the end of the dreaded Erbitux! Knowing that the end of treatment is near, many of you have been asking what our next steps are, so I asked the doctors yesterday, and this is what they said:
Vic's oncologist is very pleased with Vic's progress over these seven weeks. As the doctor said, "You still have a little smile on your face and a little twinkle in your eye—and that's something we don't always see at this point." It made me so happy to hear that! This is Vic with his oncologist:
The doctor asked that we not put his name in the blog because he didn't want the FBI to find him. I'm sure their facial recognition program won't work on the blog.
And here is Bert, another of Vic's stellar nurses. She has been taking such good care of him during his NotChemo—all the nurses have, of course!
And here we are just before the final treatment:
He got some excellent stickers for this last treatment (have I mentioned that this was his last treatment?):
And then he fell asleep and I wrote the blog! All in all, a good day.
- No more NotChemo
- A couple more saline drip hydrations, as needed
- Four more radiations
- Expect a bad week the week after treatment stops (because the medicine doesn't stop, so he might get a little worse still) :-(
- Expect things to start recovering slowly after that—full recovery could take up to a year. He will continue on the feeding tube until food and water starts to actually taste good.
- Follow up with oncologist in a few weeks
- Follow-up PET scan in three months--this is where we will find out how well the treatment did its job. You have to wait a little while because the radiation keeps working after the treatment stops, and if you do it too soon, it might show cancer that wouldn't be there even a month or two later.
- Wait
- Wait
- Wait (and so on)
Vic's oncologist is very pleased with Vic's progress over these seven weeks. As the doctor said, "You still have a little smile on your face and a little twinkle in your eye—and that's something we don't always see at this point." It made me so happy to hear that! This is Vic with his oncologist:
The doctor asked that we not put his name in the blog because he didn't want the FBI to find him. I'm sure their facial recognition program won't work on the blog.
And here is Bert, another of Vic's stellar nurses. She has been taking such good care of him during his NotChemo—all the nurses have, of course!
And here we are just before the final treatment:
He got some excellent stickers for this last treatment (have I mentioned that this was his last treatment?):
And then he fell asleep and I wrote the blog! All in all, a good day.
Sunday, August 21, 2011
The Cancer Code: Like Morse Code, but Completely Different
So, as I reported last week, Vic is getting pretty hoarse. If a butterfly flaps its wings between him and my ears, I can't hear what he says. So we've come up with a code. It goes something like this:
"Good morning, Love. Did you have a nice sleep?"
"Oh, good. I'm so glad. Can I get you anything?"
"Are you sure? Well, OK. So, how are you feeling today?"
"Oh, dear. Maybe you need to hydrate more."
"Or perhaps you are not feeding enough. I've been saying that all along, that you are not—"
(After this, we do not speak for a while. Like, hours. But after awhile, I have to speak. I am hardwired that way.)
"Oh, guess what? I was doing this row of beading, and then I got all the way through it and realized that at the beginning, I was supposed to use a teal bead but I used an aqua bead instead and I had to take it all out and do it over."
Then Wags decided she had to get into it, so here is some Wags code:
"I love you, Dad!"
"I love you, Da—does somebody have food?"
"I love you, Dad. May I please have some scratches?"
"I love you, Dad, but would you please ask Mom to get that camera off me? You know I hate having my picture taken."
"I said, would you please get that camera off me?"
"I love you, Mom—are you holding a ball?"
So off we go to play ball, and finally, it's time for bed and one last code between husband and wife:
"I love you, Sweetie."
"Good morning, Love. Did you have a nice sleep?"
"Oh, good. I'm so glad. Can I get you anything?"
"Are you sure? Well, OK. So, how are you feeling today?"
"Oh, dear. Maybe you need to hydrate more."
"Or perhaps you are not feeding enough. I've been saying that all along, that you are not—"
(After this, we do not speak for a while. Like, hours. But after awhile, I have to speak. I am hardwired that way.)
"Oh, guess what? I was doing this row of beading, and then I got all the way through it and realized that at the beginning, I was supposed to use a teal bead but I used an aqua bead instead and I had to take it all out and do it over."
Then Wags decided she had to get into it, so here is some Wags code:
"I love you, Dad!"
"I love you, Da—does somebody have food?"
"I love you, Dad. May I please have some scratches?"
"I love you, Dad, but would you please ask Mom to get that camera off me? You know I hate having my picture taken."
"I said, would you please get that camera off me?"
"I love you, Mom—are you holding a ball?"
So off we go to play ball, and finally, it's time for bed and one last code between husband and wife:
"I love you, Sweetie."
NotChemo Day 6, Radiation Days 24-28: The End in Sight
This was a good week.
Read that again, because I'm guessing that most people, at this point in their treatment, can't say this. But this was a good week.
When we last visited our intrepid hero, he was a little down in the dumps. Symptom had stacked upon symptom, and for the millionth time, we wondered whether the cure was worse than the disease.
But on the way to NotChemo this week, he said "Actually, I'm surprised. I thought I would feel worse than this."
Nothing stops you in your tracks quite like an unexpected turn of phrase.
This is a guy who has to "eat" through a feeding tube, "drink" via a saline drip, live with pain described as a 5 (with 1 being no pain and 10 being the worst pain imaginable) pretty much all the time, cough up mucous so thick that you can hear "Anticipation" playing in the background, take a thousand different pills for each of these various symptoms and then sleep somewhere in the neighborhood of 16 hours a day.
"I thought I would feel worse than this."
That's a guy I want to be married to. Oh, thank goodness. I am. :-)
So really, that's about the only update for the week. The doctor wasn't in this week, so I have nothing to report from the doctor. The lady who puts stickers on the NotChemo bag wasn't in this week, so I have no pictures of fun stickers. He slept through the entire treatment—which you've all seen before, so no need to show that again. He has no new symptoms, he doesn't feel any worse than last week, and nothing really changed.
Except his attitude, which inexplicably took a turn for the better this week, just when you'd think he couldn't take any more.
"I thought I would feel worse than this."
Read that again, because I'm guessing that most people, at this point in their treatment, can't say this. But this was a good week.
When we last visited our intrepid hero, he was a little down in the dumps. Symptom had stacked upon symptom, and for the millionth time, we wondered whether the cure was worse than the disease.
But on the way to NotChemo this week, he said "Actually, I'm surprised. I thought I would feel worse than this."
Nothing stops you in your tracks quite like an unexpected turn of phrase.
This is a guy who has to "eat" through a feeding tube, "drink" via a saline drip, live with pain described as a 5 (with 1 being no pain and 10 being the worst pain imaginable) pretty much all the time, cough up mucous so thick that you can hear "Anticipation" playing in the background, take a thousand different pills for each of these various symptoms and then sleep somewhere in the neighborhood of 16 hours a day.
"I thought I would feel worse than this."
That's a guy I want to be married to. Oh, thank goodness. I am. :-)
So really, that's about the only update for the week. The doctor wasn't in this week, so I have nothing to report from the doctor. The lady who puts stickers on the NotChemo bag wasn't in this week, so I have no pictures of fun stickers. He slept through the entire treatment—which you've all seen before, so no need to show that again. He has no new symptoms, he doesn't feel any worse than last week, and nothing really changed.
Except his attitude, which inexplicably took a turn for the better this week, just when you'd think he couldn't take any more.
"I thought I would feel worse than this."
Tuesday, August 16, 2011
Anniversary Mad Lib Part 3: Completed Mad Libs
MY MAD LIB:
Once upon a time, there was a lovely lady and a handsome man, each traveling along a different path. One day, their paths crossed. He loved her eyes, and she loved his smile—but most of all, she loved his huge heart. They liked to take long walks by the lake and hold hands in the moonlight. One day, the handsome man asked the lovely lady to marry him, and she said yes! They got married in their friends' back yard. Eventually they added a little bundle of joy to their household, a dog named Wags. And the three of them are living truly, madly, happily ever after.
YOUR MAD LIBS:
Seth
Once upon a time, there was a loquacious lady and a hirsute man, each traveling along a different path. One day, their paths crossed. He loved her boondoggles, and she loved his googleplex—but most of all, she loved his huge poop. They liked to flatulate by the lake and endure radiation in the moonlight. One day, the hirsute man asked the loquacious lady to marry him, and she said "Good gravy!" They got married in the Well of the Souls. Eventually they added a little bundle of joy to their household, a push-me-pull-you named Scully. And the three of them are living noisily, unattractively, uniquely ever after.
Seth says: You can't have a Mad Lib without poop or flatulation when you have kids.
Patty says: You gave us your beloved pet name, Scully. I am touched. :-)
Carolyn
Once upon a time, there was a limited liability lady and a limited partnership man, each traveling along a different path. One day, their paths crossed. He loved her assets, and she loved his balance sheet—but most of all, she loved his huge portfolio. They liked to define contributions by the lake and swap unsecured loans in the moonlight. One day, the limited partnership man asked the limited liability lady to marry him, and she said "At Last, My Asset Allocation has come along!" They got married at Charles Schwab. Eventually they added a little bundle of joy to their household, a bullnbear named Annuity. And the three of them are living consolidated, compounded and diversified ever after.
Says Carolyn: No, really, I haven’t been doing too much work for NEFE [the National Endowment for Financial Education] lately, I PROMISE…
Says Patty: I really do like his huge portfolio, if you know what I mean.
Colleen
Once upon a time, there was a handy lady and a ropey man, each traveling along a different path. One day, their paths crossed. He loved her cows, and she loved his horse—but most of all, she loved his huge calf. They liked to rope by the lake and dally in the moonlight. One day, the ropey man asked the handy lady to marry him, and she said "Yeehaw!" They got married at a rodeo arena. Eventually they added a little bundle of joy to their household, a goat named Twister. And the three of them are living skillfully, awkwardly, carefully ever after.
(Note: Colleen's Mad Lib is the result of a smackdown by Seth, who felt it was ... inappropriate ... of her to harsh his Mad Lib without posting her own words. Says Colleen: This is all I got on the hayseed of the world." Says Patty: "I'm glad cow patties didn't make the list—but I sure do like 'Yeehaw!'")
I'll continue to post results here for anyone who wants to send me theirs. (And Abby, if you want me to post yours, I'm going to need more than just "poop" and "boob," although those are two perfectly wonderful Mad Libs words. ;-) And thank you for sending us the Mad Libs—they are definitely taking our minds off of "other things," if only for a little while at a time.)
Once upon a time, there was a lovely lady and a handsome man, each traveling along a different path. One day, their paths crossed. He loved her eyes, and she loved his smile—but most of all, she loved his huge heart. They liked to take long walks by the lake and hold hands in the moonlight. One day, the handsome man asked the lovely lady to marry him, and she said yes! They got married in their friends' back yard. Eventually they added a little bundle of joy to their household, a dog named Wags. And the three of them are living truly, madly, happily ever after.
YOUR MAD LIBS:
Seth
Once upon a time, there was a loquacious lady and a hirsute man, each traveling along a different path. One day, their paths crossed. He loved her boondoggles, and she loved his googleplex—but most of all, she loved his huge poop. They liked to flatulate by the lake and endure radiation in the moonlight. One day, the hirsute man asked the loquacious lady to marry him, and she said "Good gravy!" They got married in the Well of the Souls. Eventually they added a little bundle of joy to their household, a push-me-pull-you named Scully. And the three of them are living noisily, unattractively, uniquely ever after.
Seth says: You can't have a Mad Lib without poop or flatulation when you have kids.
Patty says: You gave us your beloved pet name, Scully. I am touched. :-)
Carolyn
Once upon a time, there was a limited liability lady and a limited partnership man, each traveling along a different path. One day, their paths crossed. He loved her assets, and she loved his balance sheet—but most of all, she loved his huge portfolio. They liked to define contributions by the lake and swap unsecured loans in the moonlight. One day, the limited partnership man asked the limited liability lady to marry him, and she said "At Last, My Asset Allocation has come along!" They got married at Charles Schwab. Eventually they added a little bundle of joy to their household, a bullnbear named Annuity. And the three of them are living consolidated, compounded and diversified ever after.
Says Carolyn: No, really, I haven’t been doing too much work for NEFE [the National Endowment for Financial Education] lately, I PROMISE…
Says Patty: I really do like his huge portfolio, if you know what I mean.
Colleen
Once upon a time, there was a handy lady and a ropey man, each traveling along a different path. One day, their paths crossed. He loved her cows, and she loved his horse—but most of all, she loved his huge calf. They liked to rope by the lake and dally in the moonlight. One day, the ropey man asked the handy lady to marry him, and she said "Yeehaw!" They got married at a rodeo arena. Eventually they added a little bundle of joy to their household, a goat named Twister. And the three of them are living skillfully, awkwardly, carefully ever after.
(Note: Colleen's Mad Lib is the result of a smackdown by Seth, who felt it was ... inappropriate ... of her to harsh his Mad Lib without posting her own words. Says Colleen: This is all I got on the hayseed of the world." Says Patty: "I'm glad cow patties didn't make the list—but I sure do like 'Yeehaw!'")
I'll continue to post results here for anyone who wants to send me theirs. (And Abby, if you want me to post yours, I'm going to need more than just "poop" and "boob," although those are two perfectly wonderful Mad Libs words. ;-) And thank you for sending us the Mad Libs—they are definitely taking our minds off of "other things," if only for a little while at a time.)
Monday, August 15, 2011
Anniversary Mad Lib Part 2: The Mad Lib
OK, so here's the Mad Lib along with the words that go with the blanks. Anybody who did words, if you think your Mad Lib came out particularly funny, send me your words, and I'll post your completed Mad Lib! I already have one set of words, and quite frankly, I think it came out extremely funny!
Once upon a time, there was a/an __________ [adjective 1] lady and a/an __________ [adjective 2] man, each traveling along a different path. One day, their paths crossed. He loved her __________ [plural noun] , and she loved his __________ [singular noun 1]—but most of all, she loved his huge __________ [singular noun 2] . They liked to __________ [verb 1] by the lake and __________ [verb 2] in the moonlight. One day, the __________ [adjective 2, repeat] man asked the __________ [adjective 1, repeat] lady to marry him, and she said __________ [exclamation]! They got married in/at __________ [place]. Eventually they added a little bundle of joy to their household, a/an __________ [animal] named __________ [name of a pet]. And the three of them are living __________, __________, __________ [up to three adverbs] ever after.
Once upon a time, there was a/an __________ [adjective 1] lady and a/an __________ [adjective 2] man, each traveling along a different path. One day, their paths crossed. He loved her __________ [plural noun] , and she loved his __________ [singular noun 1]—but most of all, she loved his huge __________ [singular noun 2] . They liked to __________ [verb 1] by the lake and __________ [verb 2] in the moonlight. One day, the __________ [adjective 2, repeat] man asked the __________ [adjective 1, repeat] lady to marry him, and she said __________ [exclamation]! They got married in/at __________ [place]. Eventually they added a little bundle of joy to their household, a/an __________ [animal] named __________ [name of a pet]. And the three of them are living __________, __________, __________ [up to three adverbs] ever after.
Sunday, August 14, 2011
Anniversary Mad Lib Part 1: The Word List
So after our Mad Libs fun, I thought I would create a Mad Lib for those of you who like to play along with the home game. First, a word list:
adjective 1 ___________________
adjective 2 ___________________
plural noun ___________________
singular noun 1 ___________________
singular noun 2 ___________________
verb 1 ___________________
verb 2 ___________________
exclamation ___________________
place ___________________
animal ___________________
name of a pet ___________________
up to three adverbs ___________________, ___________________, ___________________
OK, now, do your words! I'll post the Mad Lib it goes with tomorrow. If you feel like your Mad Lib came out particularly funny, send me your words, and I'll post the final product when I post mine.
GO!
adjective 1 ___________________
adjective 2 ___________________
plural noun ___________________
singular noun 1 ___________________
singular noun 2 ___________________
verb 1 ___________________
verb 2 ___________________
exclamation ___________________
place ___________________
animal ___________________
name of a pet ___________________
up to three adverbs ___________________, ___________________, ___________________
OK, now, do your words! I'll post the Mad Lib it goes with tomorrow. If you feel like your Mad Lib came out particularly funny, send me your words, and I'll post the final product when I post mine.
GO!
Anniversary Mad Libs
Yesterday was our 23rd wedding anniversary.
They say when you're married long enough, you start to look like your spouse. We often talk about how we share a brain. But who knew it would come to this:
Patty's card from Vic:
Vic's card from Patty:
Anyway, you know us. Party animals. So we planned an event worthy of a 23rd anniversary: Mad Libs! It all started out innocently enough:
But then someone else had to get involved:
And it kind of went downhill from there:
But all in all, we had a great day.
They say when you're married long enough, you start to look like your spouse. We often talk about how we share a brain. But who knew it would come to this:
Patty's card from Vic:
Vic's card from Patty:
Anyway, you know us. Party animals. So we planned an event worthy of a 23rd anniversary: Mad Libs! It all started out innocently enough:
But then someone else had to get involved:
And it kind of went downhill from there:
But all in all, we had a great day.
Saturday, August 13, 2011
NotChemo Day 5, Radiation Days 19-23: Dog Days
Hello, friends and family,
Well, another week has gone by, and things are still movin' and shakin' in the Love house. This week has basically been a continuation of last week: symptoms piled on top of symptoms, treatments piled on top of treatments. I, of course, think he should to everything his doctors and nurses tell him to. And as we all know, I am always right. (Except when I'm not.) He thinks he should only do things that make sense to him, things that will kill him if he doesn't do them. (And anyone out there who has ever been sick, you know that's what you want to do as well.) So when we go to the doctor (as opposed to him going by himself), I become that horrible know-it-all tattletale we all know from elementary school. It goes like this:
Vic, proudly: I am up to five cans a day.
Patty, sternly: He's supposed to have six.
Vic, silent: [he's silent]
Patty, not silent: His radiation nurse suggested a saline drip.
Patty, not silent: His throat hurts.
Patty, not silent: He has mucous.
Patty, not silent: His tummy hurts after feeding.
You all know me. You know what it would be like to be married to me. So at this point in the blog, I'd like to insert a moment of silence for you all to offer a little pity/sympathy prayer to Vic. ;-)
[moment of silence]
Anyway, in the past, my issue has mostly been about feeding. This week it was about hydration. So the oncologist ordered a saline drip on Wednesday and Friday, and when the nurse came over to schedule it, Vic said, "I don't think I really need that."
Patty, not silent: Yes, you do.
Vic, quietly: I can just "drink" more.
Patty, superiorly: But you won't. You'll just leave bottles of water all over the house with one sip taken out of them and think you're drinking more.
Vic, quietly angry: Fine. Whatever.
Patty, more superiorly: Look, maybe you will drink more, and if that's the case, you can call and cancel the drip. But if you don't schedule it, and you don't drink more, then you won't be able to get in.
Vic, angrily angry: Then I can schedule one on Monday.
Patty, the know-it-all: And be miserable all weekend? Fine. Whatever. You're the patient, do whatever you want.
Nurse: You know, this is the issue that families fight about more than anything else.
A few minutes later, as I was waiting for Vic to get out of the bathroom to go to his radiation, the oncologist walked by and said, "You know, this is a really hard treatment, and it just rips families apart. You'll be OK." And a half-hour later, the radiation doctor said, "Have we talked about spousal tension?" And we're all, "WE ARE NOT TENSE!" ;-)
So I've tried to back off a little since Wednesday. He thinks I may be bugging him one less time a day, but I am certain it is two less times. Because that's just the kind of wife I am.
So, the pictures for this week (sorry they're not very good—I forgot to have Vic bring his camera, so these are from my phone.
First, his NotChemo bag for the week: sea lions and fish. I suppose it's stupid to get so excited to see what stickers the nurses put on each day, but I still do.
And the patient, sleeping through his treatment. Probably the best way to get through it. :-)
I do want to add a note about one other challenge we faced this week: the death of my former boss, Mark Brand. Mark was my first boss out of college, took a chance on me when no one else would. We worked together for five years, during which he mentored me and allowed me to find my own way and eventually spread my wings and fly away. Vic and I remained close to him and his family, although as with many relationships, it had turned into a Facebook/e-mail/holiday letter thing. But perhaps only a minute after I sent out the notice that Vic had been diagnosed with cancer, Mark was on the phone to find out how we were and to give us an insider's view of cancer—for that is what eventually took Mark from his friends and family. That's what kind of friend he was—there whenever you needed him and at a moment's notice. He sounded fine that day, only a month ago, so it came as quite a shock that he has been taken to the hospital and was in critical condition and as another shock when he slipped further and further away. And even when you know death is coming, it was yet another shock when we received the e-mail that he had passed away.
So I am inserting a second moment of silence to honor my friend, Mark Brand.
Mark J. Brand, December 29, 1949–August 9, 2011
Our hearts go out to his lovely wife, Maxine; his beautiful daughters Rachel and Ali (and Ali's husband Noam, of course); and his made-of-steel mother, Evelyn; his brother David, whom Mark cherished, and David's family; as well as the rest of his family, friends and students.
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