Really, nothing new to report.
Johnny has good days/bad days. Good hours/bad hours. It is just up and down with no real pattern.
Sometimes he eats and all is well. Sometimes he eats and it all makes a return appearance. We haven't been able to figure out any certain foods that cause him to be sick.
For the most part when Johnny feels good, he gets out of bed and gets moving. He even took a field trip to Bowne today to say hi to all of his co-workers and friends (thanks, Larry!). When he feels puny, he stays in bed and waits for the yucks to pass.
Hopefully the next week will be a good. Looks like the weather might be good, so I'll get him out on the deck for some high dose sun therapy.
Totally off subject here, but if your team has not made it to the final four in the NCAA tourney, could you do me a favor and cheer for Duke? I know, weird request, but if they win the tournament I have a chance to win 2nd place in our pool at work. Yeah! I have already planned on what I will buy with the winnings: A 3-piece bistro set for the deck off our bedroom. See, isn't that totally worth cheering for Duke?
Enjoy the sunshine this week!
Monday, March 29, 2010
Tuesday, March 23, 2010
Super Day -- Well, mostly
I have to say I was really nervous about last night with Johnny being so sick at the infusion center. But, after only about 8 hours, he quit vomiting! He didn't sleep very well, but never had to get up because he was getting sick. I really thought today would bring a bit more yuck, but NOPE!
Johnny ate really well today and so far (fingers crossed) has kept everything down. He even walked outside for a little bit and went to the grocery store with me. Are you ready for this? He even made dinner tonight!
Wait . . . I spoke too soon. Literally, as I was typing the previous paragraph, he walked into the bathroom and . . . well, you know.
He came out smiling, and said it was the PopTart he just ate, and that he feels fine. We are still discovering what he can and can't eat after his gallbladder removal. We aren't sure if it is the dairy or the high sugar content that bothers him, or if it is the chemo doing it. Who knows.
Anyway, he did have a really good day so lets just go with that.
Johnny ate really well today and so far (fingers crossed) has kept everything down. He even walked outside for a little bit and went to the grocery store with me. Are you ready for this? He even made dinner tonight!
Wait . . . I spoke too soon. Literally, as I was typing the previous paragraph, he walked into the bathroom and . . . well, you know.
He came out smiling, and said it was the PopTart he just ate, and that he feels fine. We are still discovering what he can and can't eat after his gallbladder removal. We aren't sure if it is the dairy or the high sugar content that bothers him, or if it is the chemo doing it. Who knows.
Anyway, he did have a really good day so lets just go with that.
Monday, March 22, 2010
And now, back to the show . . . #3
Chemo again . . . Gah! Why does the time go so fast when you really want it to slow down and vice versa? Another of the great mysteries of the universe.
First, I have to tell you about the amazing weekend we had at the Korner Kottage Bed and Breakfast in Sutton’s Bay, Michigan. We were the guests of Jim and Linda Munro, owners and former Niles residents. Staying at the Korner Kottage was like going to your favorite relatives’ house and relaxing for the whole weekend. The kind of relative that means it when they say they want you to come visit and relax. The kind of relative that will have breakfast ready for you when you wake up, and a gourmet breakfast at that -- with the most awesome coffee machine on the planet. The kind of relative that is there for you if you need anything at all (like winery suggestions) but will let you do your own thing and sleep all day if that is what you choose to do. The kind of relative that has the best dog in the world (shout out to Nestle Quik!) that is sweet and friendly, but not over-the-top. The kind of relative that has all the really cool little details in every single room, and heaven-scented bed linens. (We stayed in the Paris Room.) Yeah, it was just like that. Comfortable, warm, inviting, relaxing, amazing. And to top all that off, Sutton’s Bay is the sweetest little village. There are some great shops along the Main Street and a couple great restaurants, too. I can’t even tell you how many wineries there are in that area, but I know I counted at least 20 in the Leelanau Peninsula. We walked through town a couple times and ate at Gusto’s, an Italian restaurant within walking distance of the Kottage. (Think Pete’s Patio away from home) We also discovered a deli that had the absolute most spectacular smoked whitefish spread ever. Ever. Really.
If you have never had the pleasure of staying at a B&B, as we had not, put it on your MUST DO list. I think this may have just started a new hobby for us. It was so much more comfortable than any hotel we have ever stayed in and was so much more relaxing and enjoyable. The difference is in all the little details that a hotel just can’t provide. Really, if you are looking for a wonderful weekender for any occasion at all, call Linda and Jim. Seriously, call them. I’ll wait right here for you to get back to the blog.
Linda, we really missed seeing you, but Jim did an amazing job! We will definitely be back -- and sooner rather than later, I hope!
After our weekend away, it was really hard to think about starting up chemo again. Johnny had gained so much strength over the last week, that I didn’t want to see it drained away by the chemo, but we knew it had to be done and how important it really is.
His liver enzymes didn’t come down, but they didn’t go up, either. I think we have crested the summit and the labs will hopefully come down next time. They were 209, 298, 320 and today 321. I think we will start to see them come down, maybe not to where they need to be yet by next time but trending that direction. They have to be below 180 for them to fill the pump.
He did receive the systemic (port) chemo today and that was pretty rough. He was sick before we even left for home. He has been up and down since coming home, varying from sound asleep, vomiting, or singing old Alamo songs about Davy Crockett. I know, weird.
We had wonderful visits today at the infusion center. They have renamed the bed area that Johnny has been in the last three times as the Toad Lounge. My friend, Farid Jalinous (Dr. J), stopped in for a while, then Jeff Brawley and Tammy stopped in. Then a great surprise, Johnny’s chemo buddy from his first protocol, Carol, stopped in. She had her infusion with us in the Toad Lounge. It was so nice to see her and catch up with her; the last time we saw her was December 21st. I told Johnny just this morning that I had to email her because it had been a while, and I was thinking about her -- and there she was! Wonderful! Even my sister, Carla (HAPPY BIRTHDAY, BOOMER!), stopped in before we left. She works in that building for a pediatrician group.
So the day, although yucky for Johnny, went by very quickly. Ginger did manage to accomplish a good amount of crocheting, and I got some Kindling done. We asked for additional fluids again today, especially with him being sick so quickly. They were happy to give it to him. All of the nurses there are fabulous.
He is now in the tub and will go straight to bed when he is out. We have all of our “supplies” ready for the nighttime. Hopefully, his tummy will calm down and he will have it out of his system before going to sleep, rather than while he is trying to sleep. I hope, I hope, I hope.
Praying for a good night’s sleep, and liver enzymes that come down to an appropriate level. And for so much more.
HEY! I just check on some of the comments from previous posts: Dr. Yancey is that YOU that commented? Oh, my gosh. . . how are you? Are you eating properly? Is anyone providing you with late evening snacks? Are you taking care of all your minions? We were so happy to see that you were checking on Johnny. Incision is gorgeous! And yes, there were 53 staples, to be exact. Looks perfect! Hope you are being appreciated appropriately by all the people you are helping. . . we certainly appreciated everything you did for us. Take good care!
First, I have to tell you about the amazing weekend we had at the Korner Kottage Bed and Breakfast in Sutton’s Bay, Michigan. We were the guests of Jim and Linda Munro, owners and former Niles residents. Staying at the Korner Kottage was like going to your favorite relatives’ house and relaxing for the whole weekend. The kind of relative that means it when they say they want you to come visit and relax. The kind of relative that will have breakfast ready for you when you wake up, and a gourmet breakfast at that -- with the most awesome coffee machine on the planet. The kind of relative that is there for you if you need anything at all (like winery suggestions) but will let you do your own thing and sleep all day if that is what you choose to do. The kind of relative that has the best dog in the world (shout out to Nestle Quik!) that is sweet and friendly, but not over-the-top. The kind of relative that has all the really cool little details in every single room, and heaven-scented bed linens. (We stayed in the Paris Room.) Yeah, it was just like that. Comfortable, warm, inviting, relaxing, amazing. And to top all that off, Sutton’s Bay is the sweetest little village. There are some great shops along the Main Street and a couple great restaurants, too. I can’t even tell you how many wineries there are in that area, but I know I counted at least 20 in the Leelanau Peninsula. We walked through town a couple times and ate at Gusto’s, an Italian restaurant within walking distance of the Kottage. (Think Pete’s Patio away from home) We also discovered a deli that had the absolute most spectacular smoked whitefish spread ever. Ever. Really.
If you have never had the pleasure of staying at a B&B, as we had not, put it on your MUST DO list. I think this may have just started a new hobby for us. It was so much more comfortable than any hotel we have ever stayed in and was so much more relaxing and enjoyable. The difference is in all the little details that a hotel just can’t provide. Really, if you are looking for a wonderful weekender for any occasion at all, call Linda and Jim. Seriously, call them. I’ll wait right here for you to get back to the blog.
Linda, we really missed seeing you, but Jim did an amazing job! We will definitely be back -- and sooner rather than later, I hope!
After our weekend away, it was really hard to think about starting up chemo again. Johnny had gained so much strength over the last week, that I didn’t want to see it drained away by the chemo, but we knew it had to be done and how important it really is.
His liver enzymes didn’t come down, but they didn’t go up, either. I think we have crested the summit and the labs will hopefully come down next time. They were 209, 298, 320 and today 321. I think we will start to see them come down, maybe not to where they need to be yet by next time but trending that direction. They have to be below 180 for them to fill the pump.
He did receive the systemic (port) chemo today and that was pretty rough. He was sick before we even left for home. He has been up and down since coming home, varying from sound asleep, vomiting, or singing old Alamo songs about Davy Crockett. I know, weird.
We had wonderful visits today at the infusion center. They have renamed the bed area that Johnny has been in the last three times as the Toad Lounge. My friend, Farid Jalinous (Dr. J), stopped in for a while, then Jeff Brawley and Tammy stopped in. Then a great surprise, Johnny’s chemo buddy from his first protocol, Carol, stopped in. She had her infusion with us in the Toad Lounge. It was so nice to see her and catch up with her; the last time we saw her was December 21st. I told Johnny just this morning that I had to email her because it had been a while, and I was thinking about her -- and there she was! Wonderful! Even my sister, Carla (HAPPY BIRTHDAY, BOOMER!), stopped in before we left. She works in that building for a pediatrician group.
So the day, although yucky for Johnny, went by very quickly. Ginger did manage to accomplish a good amount of crocheting, and I got some Kindling done. We asked for additional fluids again today, especially with him being sick so quickly. They were happy to give it to him. All of the nurses there are fabulous.
He is now in the tub and will go straight to bed when he is out. We have all of our “supplies” ready for the nighttime. Hopefully, his tummy will calm down and he will have it out of his system before going to sleep, rather than while he is trying to sleep. I hope, I hope, I hope.
Praying for a good night’s sleep, and liver enzymes that come down to an appropriate level. And for so much more.
HEY! I just check on some of the comments from previous posts: Dr. Yancey is that YOU that commented? Oh, my gosh. . . how are you? Are you eating properly? Is anyone providing you with late evening snacks? Are you taking care of all your minions? We were so happy to see that you were checking on Johnny. Incision is gorgeous! And yes, there were 53 staples, to be exact. Looks perfect! Hope you are being appreciated appropriately by all the people you are helping. . . we certainly appreciated everything you did for us. Take good care!
Friday, March 19, 2010
Temporary Interruption
We now interrupt cancer for an entire weekend!
The Fighting Toad and the Mrs. will be together and ALONE for the entire weekend. Please don't come looking for us, we are hiding.
I'm so excited!
The Fighting Toad and the Mrs. will be together and ALONE for the entire weekend. Please don't come looking for us, we are hiding.
I'm so excited!
Tuesday, March 16, 2010
Maybe a little better?
OK, before you all start hollering about how long it has been since I last posted, I just want you to know that I am trying to protect you all from the redundancy of day-to-day life here at Chemo Central.
When I say that each day consists of nausea, vomiting, diarrhea &/or constipation, sleeping, and a freezing Toad, I am not kidding. Just scramble up the order in which these events occur and you could have any given day, any given hour.
I will say that yesterday and today both have shown improvements. Johnny has been much more wakeful than he has been in quite a while. His color is a bit better -- still on the pale side, but pinking up.
Right now, I am wondering about his blood counts (especially the Hemoglobin and Hematocrit -- components of the Red Blood Cells). He has been super cold over the past few days and just can't warm up. When I got home from work yesterday, I was getting dinner on the table and seriously thought I was having a "Waking Hours Hot Flash". That would have been a new one to me. Most of my "flashes" have been of the nocturnal variety. Johnny was laying on the couch all snuggled up in sweats, a hoodie, and a fuzzy blanket.
"I am roasting to death!" I tell Johnny. "Did you turn up the heat, or something?"
"I might have," he admits from under the blanket.
Yeah, maybe. I looked at the thermostat and it was almost 80 degrees in the house. I am not kidding! And here I thought my peri-menopausal crap had kicked into overdrive. What relief. And, I turned the thermostat back down to 68 degrees.
Progress is slow, but sure. I hate that it is already Tuesday of Week 2 and Week 1 looms dark on the next horizon.
The good news is we are getting away for the weekend -- ALONE! Our 22nd anniversary is on the 26th and we have been gifted a weekend at the Korner Kottage Bed and Breakfast in Sutton's Bay, Michigan. We decided that this weekend would be the best since we are as far away from chemo as we can get. How lucky are we?!?! I have never been to a B&B before, and I am completely stoked to have Johnny all to myself for the whole weekend. Thanks so very much to Linda and Jim Munro for this incredibly special gift. It couldn't come at a more important time for us.
On a completely different note, please go to HERE and vote for the cute little redhead (#2565). He is my nephew, Griffin -- Carla's little guy. (This is a Cute Baby Contest that a radio station is putting on.) Please vote once a day until March 29th! I want him to win sooooo bad!!! Thanks, I knew I could count on all my blog friends! By the way, Carla is NOT happy with the picture that they posted. They took the pictures at a Family Show at Century Center. I guess they took several pictures and posted the ONE that he isn't smiling in. No matter, he is still cute as a freakin' bug . . . so, VOTE!
Thanks for checking in on us. It really does mean a lot.
When I say that each day consists of nausea, vomiting, diarrhea &/or constipation, sleeping, and a freezing Toad, I am not kidding. Just scramble up the order in which these events occur and you could have any given day, any given hour.
I will say that yesterday and today both have shown improvements. Johnny has been much more wakeful than he has been in quite a while. His color is a bit better -- still on the pale side, but pinking up.
Right now, I am wondering about his blood counts (especially the Hemoglobin and Hematocrit -- components of the Red Blood Cells). He has been super cold over the past few days and just can't warm up. When I got home from work yesterday, I was getting dinner on the table and seriously thought I was having a "Waking Hours Hot Flash". That would have been a new one to me. Most of my "flashes" have been of the nocturnal variety. Johnny was laying on the couch all snuggled up in sweats, a hoodie, and a fuzzy blanket.
"I am roasting to death!" I tell Johnny. "Did you turn up the heat, or something?"
"I might have," he admits from under the blanket.
Yeah, maybe. I looked at the thermostat and it was almost 80 degrees in the house. I am not kidding! And here I thought my peri-menopausal crap had kicked into overdrive. What relief. And, I turned the thermostat back down to 68 degrees.
Progress is slow, but sure. I hate that it is already Tuesday of Week 2 and Week 1 looms dark on the next horizon.
The good news is we are getting away for the weekend -- ALONE! Our 22nd anniversary is on the 26th and we have been gifted a weekend at the Korner Kottage Bed and Breakfast in Sutton's Bay, Michigan. We decided that this weekend would be the best since we are as far away from chemo as we can get. How lucky are we?!?! I have never been to a B&B before, and I am completely stoked to have Johnny all to myself for the whole weekend. Thanks so very much to Linda and Jim Munro for this incredibly special gift. It couldn't come at a more important time for us.
On a completely different note, please go to HERE and vote for the cute little redhead (#2565). He is my nephew, Griffin -- Carla's little guy. (This is a Cute Baby Contest that a radio station is putting on.) Please vote once a day until March 29th! I want him to win sooooo bad!!! Thanks, I knew I could count on all my blog friends! By the way, Carla is NOT happy with the picture that they posted. They took the pictures at a Family Show at Century Center. I guess they took several pictures and posted the ONE that he isn't smiling in. No matter, he is still cute as a freakin' bug . . . so, VOTE!
Thanks for checking in on us. It really does mean a lot.
Thursday, March 11, 2010
Not Quite Perfected
What should I say about Round Two? -- (keep it clean, this is a family show) --
My hope was that we had learned enough from Round One that we could conquer Round Two (R2) straight out of the starting gates. Evidently, we didn't get everything right.
From the last post you know that R2 caused us to spend 8 1/2 hours at the infusion center. Even though we couldn't fill the HAI pump, I still felt pretty confident that the extra hydration they gave Johnny was going to go a long way to improving things this week. I also thought that the Sandostatin shot was going to be the blessing that Emend was with Protocol One (P1); it did start off that way, actually.
Tuesday and Wednesday were pretty similar to last round. Nausea and vomiting started off late Tuesday night and continued through Wednesday night. The Sandostatin shot kept the firerhea at bay, but also caused some slight constipation. Obviously we needed to give him a little something for the constipation, so I went really slowly with the Colace.
Fast forward to Thursday evening: The vomiting has stopped (for the most part) but the firerhea has started. We just can't seem to find a happy medium with the diarrhea/constipation. Talk about frustrating.
I will most likely take Johnny in tomorrow for IV hydration. He is starting to look a little green around the gills, and I don't want to put it off until Monday. Waiting til Monday last time was a really bad idea.
So, if I could just ask for a few more prayers, I would really appreciate anything you could send up on Johnny's behalf. This has been so much harder than we expected.
My hope was that we had learned enough from Round One that we could conquer Round Two (R2) straight out of the starting gates. Evidently, we didn't get everything right.
From the last post you know that R2 caused us to spend 8 1/2 hours at the infusion center. Even though we couldn't fill the HAI pump, I still felt pretty confident that the extra hydration they gave Johnny was going to go a long way to improving things this week. I also thought that the Sandostatin shot was going to be the blessing that Emend was with Protocol One (P1); it did start off that way, actually.
Tuesday and Wednesday were pretty similar to last round. Nausea and vomiting started off late Tuesday night and continued through Wednesday night. The Sandostatin shot kept the firerhea at bay, but also caused some slight constipation. Obviously we needed to give him a little something for the constipation, so I went really slowly with the Colace.
Fast forward to Thursday evening: The vomiting has stopped (for the most part) but the firerhea has started. We just can't seem to find a happy medium with the diarrhea/constipation. Talk about frustrating.
I will most likely take Johnny in tomorrow for IV hydration. He is starting to look a little green around the gills, and I don't want to put it off until Monday. Waiting til Monday last time was a really bad idea.
So, if I could just ask for a few more prayers, I would really appreciate anything you could send up on Johnny's behalf. This has been so much harder than we expected.
Tuesday, March 9, 2010
Long Day in the Land of Chemo #2
I think Dr. Ansari jinxed us with the first protocol of chemo. He told Johnny he was "thriving" on it, but I'd now like him to eat those words.
Let me give you the run-down of yesterday in the infusion center. It was a very, very, very long day.
Johnny's appointment was at 8:45. We arrived and like every other time, he had his port accessed, labs drawn, and our visit with Dr. Ansari.
Dr. Ansari was happy to see Johnny feeling significantly better than the last time we were in there. Johnny's weight was steady, so no more weight loss was good. After discussing the seriousness of the diarrhea and vomiting from the first round, Dr. Ansari said that he would add a once a month injection called Sandostatin to combat the severe diarrhea. Hopefully this will be as effective as the Emend was from the first protocol.
Then off to the infusion room. Johnny was still feeling a little run-down and not himself, so he chose to lay in a room with a bed again. I actually like it back there, so I didn't mind at all. The only thing that bothers me is that he isn't being social in one of the only venues available to him during the week. Maybe next week he will feel like being out among the people.
Before they started the anti-nausea med (Aloxi) I asked the nurse if they could hang extra fluids. Normally when they run a piggyback med, they hang it with a 500 mL bag of fluids. I asked if we could go with a full liter, possibly more. I told them I was anticipating the dehydration that we went through before, and it made sense to me to get as much in to him as we could before it started coming out. The nurse thought it was a great idea, so they ended up giving him a total of 1.5 liters with the Aloxi, Decadron, and CPT-11.
We waited and waited for the liver function lab results. When they finally came back, boo hiss. His alkaline phosphatase was still too elevated. As a matter of fact, it has gone up. The SGOT/SGPT has basically remained the same, but within the range allowable for the HAI pump chemo to get started. We have no idea why the alk phos is going up, but it makes me mad. Really, really mad.
To be perfectly honest, it also made me scared and while Johnny lay in the bed receiving the remainder of the fluids, I started to cry. Fear and frustration are a terrible combination for me. Always means tears.
Johnny is always the voice of reason. He reminded me that the original plan was 6-8 weeks after the pump placement was when they would start the HAI chemo. So, technically we are only at 4 weeks post-op. I know, I get that. I just wanted it to start without any more issues. Maybe we shouldn't have even looked at the labs yet. . . I don't know.
I plan on calling Dr. House to find out if there is something we should be doing/not doing to get the alk phos down.
After the infusions were finished, we went through the emptying and re-filling of the HAI pump. Johnny was still nervous with the procedure, but it was done and over in a couple minutes. I can tell that it will continue to get easier and easier each time we go. Several people were in attendace for yesterday's performance, because they want to get as many people trained as possible. They, too, are anticipating seeing an increase in the number of HAI pumps with Dr. House being in such close proximity to South Bend.
Finally, with everything else complete (I still haven't figured out why it took allllllll daaaaaayyy looooonngg.) Johnny got the shot in his butt for the Sandostatin. We were out the door just after 5 p.m.
So, all of that was yesterday. Last night Johnny had a little vomiting but not too bad. He didn't sleep well, but didn't need to get out of bed much. All day today he has been quiet and has had the on-again/off-again tummy ache. No firerhea as of yet. Vomiting has started back up late this evening, so I am starting to get a little nervous for the remainder of the night. Praying hard that everything eases up and he will be able to get some sleep. . . .sigh . . .
Please pray for a decent night for Johnny and that he doesn't get dehydrated. Also pray that the liver enzymes cooperate with us and will be within an acceptable range for the next round. We have decided to not even check next Monday; we will just wait the two weeks until his next scheduled systemic infusion.
Thanks to Amberg's for a wonderful dinner last night!
Let me give you the run-down of yesterday in the infusion center. It was a very, very, very long day.
Johnny's appointment was at 8:45. We arrived and like every other time, he had his port accessed, labs drawn, and our visit with Dr. Ansari.
Dr. Ansari was happy to see Johnny feeling significantly better than the last time we were in there. Johnny's weight was steady, so no more weight loss was good. After discussing the seriousness of the diarrhea and vomiting from the first round, Dr. Ansari said that he would add a once a month injection called Sandostatin to combat the severe diarrhea. Hopefully this will be as effective as the Emend was from the first protocol.
Then off to the infusion room. Johnny was still feeling a little run-down and not himself, so he chose to lay in a room with a bed again. I actually like it back there, so I didn't mind at all. The only thing that bothers me is that he isn't being social in one of the only venues available to him during the week. Maybe next week he will feel like being out among the people.
Before they started the anti-nausea med (Aloxi) I asked the nurse if they could hang extra fluids. Normally when they run a piggyback med, they hang it with a 500 mL bag of fluids. I asked if we could go with a full liter, possibly more. I told them I was anticipating the dehydration that we went through before, and it made sense to me to get as much in to him as we could before it started coming out. The nurse thought it was a great idea, so they ended up giving him a total of 1.5 liters with the Aloxi, Decadron, and CPT-11.
We waited and waited for the liver function lab results. When they finally came back, boo hiss. His alkaline phosphatase was still too elevated. As a matter of fact, it has gone up. The SGOT/SGPT has basically remained the same, but within the range allowable for the HAI pump chemo to get started. We have no idea why the alk phos is going up, but it makes me mad. Really, really mad.
To be perfectly honest, it also made me scared and while Johnny lay in the bed receiving the remainder of the fluids, I started to cry. Fear and frustration are a terrible combination for me. Always means tears.
Johnny is always the voice of reason. He reminded me that the original plan was 6-8 weeks after the pump placement was when they would start the HAI chemo. So, technically we are only at 4 weeks post-op. I know, I get that. I just wanted it to start without any more issues. Maybe we shouldn't have even looked at the labs yet. . . I don't know.
I plan on calling Dr. House to find out if there is something we should be doing/not doing to get the alk phos down.
After the infusions were finished, we went through the emptying and re-filling of the HAI pump. Johnny was still nervous with the procedure, but it was done and over in a couple minutes. I can tell that it will continue to get easier and easier each time we go. Several people were in attendace for yesterday's performance, because they want to get as many people trained as possible. They, too, are anticipating seeing an increase in the number of HAI pumps with Dr. House being in such close proximity to South Bend.
Finally, with everything else complete (I still haven't figured out why it took allllllll daaaaaayyy looooonngg.) Johnny got the shot in his butt for the Sandostatin. We were out the door just after 5 p.m.
So, all of that was yesterday. Last night Johnny had a little vomiting but not too bad. He didn't sleep well, but didn't need to get out of bed much. All day today he has been quiet and has had the on-again/off-again tummy ache. No firerhea as of yet. Vomiting has started back up late this evening, so I am starting to get a little nervous for the remainder of the night. Praying hard that everything eases up and he will be able to get some sleep. . . .sigh . . .
Please pray for a decent night for Johnny and that he doesn't get dehydrated. Also pray that the liver enzymes cooperate with us and will be within an acceptable range for the next round. We have decided to not even check next Monday; we will just wait the two weeks until his next scheduled systemic infusion.
Thanks to Amberg's for a wonderful dinner last night!
Thursday, March 4, 2010
What We've Learned
Ok, that's it. I am never going to admit that Johnny had a good day again. Just when you think it is safe to go back in the water. . .
Last night was a doozy. Seems there is this little thing called "rebound constipation". Yeah.
Johnny's tummy started to feel tight again last night before bed, and he was just really uncomfortable. We talked about the last time he had had any action "down there" . . . and I don't mean in the Biblical sense. Potty action, you know? It was on Wicked Wednesday, an entire week ago.
In the meantime he had been significantly sick and dehydrated, but still thought that was a pretty long time to go without a poo. I gave him some of the Magic Elixir at about 11 p.m. and waited to see if anything would happen. He took a soak in the tub to try and relax, thinking that would help. He took his p.m. meds in the hope that it would help him get to sleep, and hopefully in the morning something would be "moving".
My poor Toad tossed and turned in the bed for the entire night. He was doing figure-8s like a championship ice skater. That would go on for about 30 minutes and he would get up and try to go again. Back to bed, figure-8s, back to the bathroom. Seriously, for the entire night. While he was trying to find a comfortable position, I would lay still as a board so that in case he got into a good spot, I wouldn't ruin it for him by changing my position. When he would fall asleep for a few minutes at a time, he would moan -- it was pitiful and my heart broke for him. I gave him some good old Sennokot around 2 and another batch of Magic Elixir at 3:30-ish. At almost 5 this morning he has some minimal "success" and we both felt that he had probably turned the corner.
It was really scary from about 2 to 5, though. I figured it was probably a bowel obstruction caused by surgical adhesions that had already started to form. Probably wrapped tightly around the catheter connecting the HAI pump to the liver, too. At one point I said, "Do I need to take you to the hospital?" He didn't think we had gotten to that point yet, but I was completely serious. He promised he would let me if he thought things weren't going to work out from the potty end -- so to speak. Again, this is where a little knowledge can go a long way towards driving you insane, especially when it is the middle of the night.
Happily, things started to "move", and how. I took the boys to school and when I came back, Johnny was comfortably sleeping in bed, exhausted. I joined him and we both ended up sleeping until almost noon! Obviously, he has been tired today, but overall much, much better than last night.
And just think, in 4 days we get to start this cycle all over again! I promise you, I have learned sooooo much in the last two weeks, and it is my solemn oath that I will do a better job with his next cycle. Here the plans according to what we have experienced with Round One:
What really makes Johnny feel good is the visits and phone calls. He is such a social butterfly that being basically trapped in these four walls is very difficult for him. Please continue to pop over for a chat or to ring him up on the phone. If he has to cut the visit short because he isn't feeling well, then that is what he will do, but please don't NOT come over because you don't think you should. He loves the company. (Thanks for the visits today, Jeff and Dave!)
We will just relax and hang out over the weekend, anticipating Round Two. I think the next round is ours.
Last night was a doozy. Seems there is this little thing called "rebound constipation". Yeah.
Johnny's tummy started to feel tight again last night before bed, and he was just really uncomfortable. We talked about the last time he had had any action "down there" . . . and I don't mean in the Biblical sense. Potty action, you know? It was on Wicked Wednesday, an entire week ago.
In the meantime he had been significantly sick and dehydrated, but still thought that was a pretty long time to go without a poo. I gave him some of the Magic Elixir at about 11 p.m. and waited to see if anything would happen. He took a soak in the tub to try and relax, thinking that would help. He took his p.m. meds in the hope that it would help him get to sleep, and hopefully in the morning something would be "moving".
My poor Toad tossed and turned in the bed for the entire night. He was doing figure-8s like a championship ice skater. That would go on for about 30 minutes and he would get up and try to go again. Back to bed, figure-8s, back to the bathroom. Seriously, for the entire night. While he was trying to find a comfortable position, I would lay still as a board so that in case he got into a good spot, I wouldn't ruin it for him by changing my position. When he would fall asleep for a few minutes at a time, he would moan -- it was pitiful and my heart broke for him. I gave him some good old Sennokot around 2 and another batch of Magic Elixir at 3:30-ish. At almost 5 this morning he has some minimal "success" and we both felt that he had probably turned the corner.
It was really scary from about 2 to 5, though. I figured it was probably a bowel obstruction caused by surgical adhesions that had already started to form. Probably wrapped tightly around the catheter connecting the HAI pump to the liver, too. At one point I said, "Do I need to take you to the hospital?" He didn't think we had gotten to that point yet, but I was completely serious. He promised he would let me if he thought things weren't going to work out from the potty end -- so to speak. Again, this is where a little knowledge can go a long way towards driving you insane, especially when it is the middle of the night.
Happily, things started to "move", and how. I took the boys to school and when I came back, Johnny was comfortably sleeping in bed, exhausted. I joined him and we both ended up sleeping until almost noon! Obviously, he has been tired today, but overall much, much better than last night.
And just think, in 4 days we get to start this cycle all over again! I promise you, I have learned sooooo much in the last two weeks, and it is my solemn oath that I will do a better job with his next cycle. Here the plans according to what we have experienced with Round One:
- Hydrate, hydrate, hydrate all weekend long prior to chemo. He won't argue the point with me this time, I'll bet.
- Start anti-nausea, anti-emetics before arriving at chemo. (Emend the wonder drug is contra-indicated with this chemo protocol, dang it.)
- Start CPT-11 Imodium protocol at first sign of "tight" feeling in his belly.
- If he has significant vomiting &/or firerhea this time, I won't even hesitate to take him in for hydration first thing in the morning. I'm not playing the "wait and see" game this time!
- As soon as vomiting/firerhea stops, wait a day and start Sennokot to avoid "rebound constipation".
- Push fluids. Fluids are our friend.
- Pray even harder.
What really makes Johnny feel good is the visits and phone calls. He is such a social butterfly that being basically trapped in these four walls is very difficult for him. Please continue to pop over for a chat or to ring him up on the phone. If he has to cut the visit short because he isn't feeling well, then that is what he will do, but please don't NOT come over because you don't think you should. He loves the company. (Thanks for the visits today, Jeff and Dave!)
We will just relax and hang out over the weekend, anticipating Round Two. I think the next round is ours.
Wednesday, March 3, 2010
Sunny Day
When the sun shines, everything just feels so much better, don't you agree?
After receiving fluids, steroids, etc., on Monday, Johnny has had a couple of pretty good days. Yesterday he ventured to Wal-Mart with me again (DON'T EVEN GET ME STARTED!) but that was pretty much it for activity. Napped most of the day, otherwise.
Today he slept late but then got up for several hours, and even made his famous "Jake Steaks" for dinner. The sparkle was back in his eyes a bit and he was even quite the tease today, which tells me he is feeling much better. He is now sleeping on the couch, and in an hour or so will get up, grab something to drink and head to bed. Nights are pretty early around here, which is actually quite nice. I like a quiet house in the evening.
My greatest hope is that his liver is recovering and will be in good order for Monday (which gets here so fast!) and we will finally be able to put the HAI pump to work.
Since we are laying low today, not much to report. Just wanted to let you all know that he is doing so much better and we appreciate the prayers.
Much love to all.
After receiving fluids, steroids, etc., on Monday, Johnny has had a couple of pretty good days. Yesterday he ventured to Wal-Mart with me again (DON'T EVEN GET ME STARTED!) but that was pretty much it for activity. Napped most of the day, otherwise.
Today he slept late but then got up for several hours, and even made his famous "Jake Steaks" for dinner. The sparkle was back in his eyes a bit and he was even quite the tease today, which tells me he is feeling much better. He is now sleeping on the couch, and in an hour or so will get up, grab something to drink and head to bed. Nights are pretty early around here, which is actually quite nice. I like a quiet house in the evening.
My greatest hope is that his liver is recovering and will be in good order for Monday (which gets here so fast!) and we will finally be able to put the HAI pump to work.
Since we are laying low today, not much to report. Just wanted to let you all know that he is doing so much better and we appreciate the prayers.
Much love to all.
Monday, March 1, 2010
Body Fluids
It’s all about fluids. Bodily fluids.
If your body thinks you have too much, then it rids itself of all perceived overages through a variety of orifices.
When your body has made a terrible mistake and has rid itself of way too many fluids, it needs help in having them replenished.
We have run the full gamut.
Today was Johnny’s appointment to have his liver enzymes checked to see if it was time to have his bright, shiny new pump finally put to use. (It wasn’t: liver enzymes still elevated. Drats.) We weren’t actually schedule with an appointment with Dr. Ansari, but when his nurse saw Johnny walk in, she told Dr. Ansari that Johnny looked pretty bad and after the labs were drawn he sent for us.
Remember how he teased Johnny about “thriving” on chemo with the first protocol? He was openly concerned about Johnny and how awful he looked after the first round of CPT-11. When Dr. Ansari came in the exam room, Johnny was laying on the exam table. He has NEVER laid on the exam table. Keep in mind, he has only started one of his two protocols at this point. Makes me a little scared for when they do fill the pump. He said that regardless of what the liver enzymes showed, Johnny was too sick today to start the FUDR protocol through the pump. We were hoping to get both protocols on the same schedule, so it wasn’t all bad. If the enzymes come down by next Monday they will do both chemotherapies.
He rattled off a list of stuff for the nurse to do for Johnny, including hydration with at least two liters of normal saline, Decadron, and IV anti-emetics. Johnny was so pitiful, that he had to be put in one of the private rooms today. Usually he sits out in the main infusion room in the big leather recliners looking out on the city and chatting with all of his newly acquired friends. Today, he curled up on a bed covered in a couple blankets and looked downright dreadful. I sat on the couch in the room and really had a hard time not crying. He looked like a chemo patient.
They infused the first liter of fluids with the anti-emetics. The second liter was infused with the Decadron (steroid). At the end of the second liter, the nurse asked if he had gotten up yet to use the restroom. He hadn’t. He hadn’t even stirred. I woke him up and asked if he thought he could go to the bathroom. Slowly and deliberately he got up. He was like a drunken sailor trying to walk to the bathroom (about 10 feet away). I had to help steady him the whole time he was up. I helped him back to bed and the nurse came to see how he had done. Success, but still “concentrated” (for you medical folks out there).
She was afraid of giving him too much, but agreed that another ½ liter was probably in order. So, she hung yet another bag of fluids.
We were there from 9 a.m. until after 3 p.m. today. It was a long day, to say the least. Especially if you consider that he didn’t even get chemo! Finally, I asked Johnny if he thought he could make it to the car. He said that other than being a bit groggy and dizzy from laying down, he was feeling better. His stomach ache was gone, which was a huge relief.
Once we got home, the Decadron started to kick in and gave him a boost in his energy. He actually sat up on the couch for quite a little while and sat at the bar and ate dinner with us (albeit an abbreviated version of dinner).
He has been relatively conversational this evening, although I see him petering out as it passes 8:00.
We were really spoiled with the first go-round of chemo, to be sure. I think this is a more accurate representation of what chemo must really be like. I can tell you one thing for sure. . . I don’t like it.
Please pray for my Johnny to keep his fluids in tonight, and for his liver enzymes to start cooperating with us.
If your body thinks you have too much, then it rids itself of all perceived overages through a variety of orifices.
When your body has made a terrible mistake and has rid itself of way too many fluids, it needs help in having them replenished.
We have run the full gamut.
Today was Johnny’s appointment to have his liver enzymes checked to see if it was time to have his bright, shiny new pump finally put to use. (It wasn’t: liver enzymes still elevated. Drats.) We weren’t actually schedule with an appointment with Dr. Ansari, but when his nurse saw Johnny walk in, she told Dr. Ansari that Johnny looked pretty bad and after the labs were drawn he sent for us.
Remember how he teased Johnny about “thriving” on chemo with the first protocol? He was openly concerned about Johnny and how awful he looked after the first round of CPT-11. When Dr. Ansari came in the exam room, Johnny was laying on the exam table. He has NEVER laid on the exam table. Keep in mind, he has only started one of his two protocols at this point. Makes me a little scared for when they do fill the pump. He said that regardless of what the liver enzymes showed, Johnny was too sick today to start the FUDR protocol through the pump. We were hoping to get both protocols on the same schedule, so it wasn’t all bad. If the enzymes come down by next Monday they will do both chemotherapies.
He rattled off a list of stuff for the nurse to do for Johnny, including hydration with at least two liters of normal saline, Decadron, and IV anti-emetics. Johnny was so pitiful, that he had to be put in one of the private rooms today. Usually he sits out in the main infusion room in the big leather recliners looking out on the city and chatting with all of his newly acquired friends. Today, he curled up on a bed covered in a couple blankets and looked downright dreadful. I sat on the couch in the room and really had a hard time not crying. He looked like a chemo patient.
They infused the first liter of fluids with the anti-emetics. The second liter was infused with the Decadron (steroid). At the end of the second liter, the nurse asked if he had gotten up yet to use the restroom. He hadn’t. He hadn’t even stirred. I woke him up and asked if he thought he could go to the bathroom. Slowly and deliberately he got up. He was like a drunken sailor trying to walk to the bathroom (about 10 feet away). I had to help steady him the whole time he was up. I helped him back to bed and the nurse came to see how he had done. Success, but still “concentrated” (for you medical folks out there).
She was afraid of giving him too much, but agreed that another ½ liter was probably in order. So, she hung yet another bag of fluids.
We were there from 9 a.m. until after 3 p.m. today. It was a long day, to say the least. Especially if you consider that he didn’t even get chemo! Finally, I asked Johnny if he thought he could make it to the car. He said that other than being a bit groggy and dizzy from laying down, he was feeling better. His stomach ache was gone, which was a huge relief.
Once we got home, the Decadron started to kick in and gave him a boost in his energy. He actually sat up on the couch for quite a little while and sat at the bar and ate dinner with us (albeit an abbreviated version of dinner).
He has been relatively conversational this evening, although I see him petering out as it passes 8:00.
We were really spoiled with the first go-round of chemo, to be sure. I think this is a more accurate representation of what chemo must really be like. I can tell you one thing for sure. . . I don’t like it.
Please pray for my Johnny to keep his fluids in tonight, and for his liver enzymes to start cooperating with us.
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