Isn't it funny. . .
Since Evil Wednesday, Johnny has had approximately 240 minutes of wakefulness each day. That's right, do the math, about 4 hours. A day.
I check on him regularly to make sure he is ok, and then he just falls right back to sleep. I wake him for the next round of medicines and to drink as much as he possibly can while awake, and then he falls right back to sleep. I wake him to see if he wants a change of scenery and help him to the couch in the living room, and then he falls right back to sleep. I wake him because I am kissing the top of his gloriously bald head (which by the way, does NOT smell like a baby anymore, drats!), and then he falls right back to sleep.
While he sleeps, I'm totally mastering my Farmville skills (Level 41, Baby!) and putzing around the house. I've spend so much time on Facebook, they should be sending me a thank-you note pretty soon. Jake and I have worked on the Man Cave a bit each day. I've helped Quinn with the unfinished homework assignments that have him grounded until he can legally buy booze. I've actually organized the scary storage part of the basement, and I've acquired Kindle-Thumb.
SIDE NOTE: Seriously, you will see in the not-to-distant future that Kindle-Thumb will be an actual diagnosis with an ICD-9/CPT code and everything (that's medical jargon). If you sit and read an electronic reader for say, more than 2 hours at a stretch, the muscular part of the palm of your hand that provides function to your thumb becomes stiff and a little crampy. True story. I have to set down my Kindle at timed intervals now and do some thumb calisthenics just so I don't suffer a strain or a more serious bout of Kindle-Thumb. Oh, my gosh. I've just realized that I am so completely out of shape, that even my thumbs have given up on me. Sad. Very sad, indeed.
But, I digress . . .
Back to the Sleeping Toad.
I told him today that I so totally miss him. He is here, but he isn't. We haven't had a good conversation since Tuesday. We both feel the void. He has no clue what day it is because the days are flying by while he sleeps them away. I watch the seconds on the clock tick slowly away while I watch him sleep. That is hard on both of us.
Ironic that he is awake for 240 minutes, and that tends to be my nightly total of sleep. (Don't worry, I am more than willing to nap with him during the day, and I DO! -- ask my kids!) And, YES, I have some things from my doctor that help in that department, so I am fine. (I just know I am going to hear about admitting to 4 hours of sleep a night!)
If sleeping is what gets him through this nastiness, then sleep away my Toad Prince.
Sweet dreams to all of you, too.
To Linda M. -- Thank you, thank you, thank you. You made me smile and look forward to something special today.
Saturday, February 27, 2010
Thursday, February 25, 2010
So Maybe He's Not a Wimp
Oh, sure. Now I just feel terrible for calling him a wimp.
Yesterday was probably the worst day Johnny Brawley has ever had. Ever.
When he woke up, he wasn’t feeling well, but just couldn’t figure out what was going to happen. Constipation vs. Firerhea. He had stomach pain up high and said his stomach felt “tight”.
Other than giving him anti-nausea meds, I didn’t know what else to do. I couldn’t give him Colace if he was going to end up with diarrhea. I couldn’t give him Imodium if he was going to end up constipated. Since this was our first time with this chemo, we just kinda had to wait and see.
That was probably a mistake.
When the diarrhea and vomiting started, it was like chasing down a runaway train. He couldn’t keep anything in, and even if he tried, medicine wasn’t going to stay in if we actually got it in. Things spiraled downhill pretty quickly.
Again, without being graphic, there were times that the potty was occupied, and he still needed the bucket. I was there to empty the bucket in the other bathroom, as quickly as possible, because he needed it almost non-stop for a while. He was so weak he could barely keep his head held up, and most of the time rested his head in a towel that he held in both hands. I tried to keep him cooled off with a cold washcloth, but I think that was more for me than him.
I finally called the MHO office (after hours) and the nurse on-call gave me a call right back. She told me to wait until he had gone 10 minutes or so without vomiting and to double up on some of his anti-nausea meds. I also started the CPT-11 Imodium protocol which basically means I have to give Imodium every two hours continuously until he has had no diarrhea for 12 hours. Let me just say, that is a lot of Imodium.
Sometime after midnight, he managed to get the anti-nausea/anti-emetic meds down and they stayed down. I think that was our turning point.
At one point I can remember thinking to myself that I was so happy he had put on 20 pounds while on the other chemo protocol, because that was already melting away before my eyes. His legs, arms, and booty look so thin already. I just prayed and prayed that it wouldn’t continue like this for the next chemo rounds. I could sense that Johnny was feeling beaten down from being so sick so soon. It was on his face, and in my heart.
As his wife, there are so many times that I feel so completely helpless. I can’t take it away, I can’t make it better, I can’t stop it from happening. I just have to concentrate on doing what I can do: keeping his cup filled, giving his meds on time, warming up his feet before bed, and telling him I love him.
No matter what I do to try to make him comfy, he always says, “Thank you.” Most of the time, that makes me cry. I usually say something like, “You don’t have to thank me.” And he always say, “Yes, I do.”
Man, I love him.
So, during the night last night, I woke him every couple hours for his Imodium pills. When he would take them, I would tell him to drink as much as he possibly could. I think he actually managed about 12 ounces through the night. I was really happy with that.
When he woke this morning (for more pills) he said he felt a lot better already. He basically stayed in bed until about 1:30, when I told him he really needed a shower. No, really. Bad. I envisioned those prison movies when they hose down the new detainees. That’s the kind of shower he needed.
We settled for one at our house. I put a step stool in the shower for him to sit on and he actually managed very nicely. He said that made a huge difference in how he felt. After he rested for a little bit, I gave him a delightful pedicure (DON’T GET ME STARTED ON NASTY FEET!) and then made him some soup for lunch. Ok, well, my dad made the soup, but I warmed it up to the exact right temperature. He ate a little and had a bit more to drink. I was satisfied and told him if he kept drinking throughout the day, I wouldn’t nag.
Basically, that was all he ate today, but he’s had almost 40 ounces of fluids. Probably not even close to re-hydrated, but we are still walking a fine line here.
He is already in bed for the night (8:30), but I will force fluids on him when I wake him for the Imodium and other meds he still has to take.
I’m hoping (and praying) that tomorrow will have a more normal rhythm to it, for his sake.
Yesterday was probably the worst day Johnny Brawley has ever had. Ever.
When he woke up, he wasn’t feeling well, but just couldn’t figure out what was going to happen. Constipation vs. Firerhea. He had stomach pain up high and said his stomach felt “tight”.
Other than giving him anti-nausea meds, I didn’t know what else to do. I couldn’t give him Colace if he was going to end up with diarrhea. I couldn’t give him Imodium if he was going to end up constipated. Since this was our first time with this chemo, we just kinda had to wait and see.
That was probably a mistake.
When the diarrhea and vomiting started, it was like chasing down a runaway train. He couldn’t keep anything in, and even if he tried, medicine wasn’t going to stay in if we actually got it in. Things spiraled downhill pretty quickly.
Again, without being graphic, there were times that the potty was occupied, and he still needed the bucket. I was there to empty the bucket in the other bathroom, as quickly as possible, because he needed it almost non-stop for a while. He was so weak he could barely keep his head held up, and most of the time rested his head in a towel that he held in both hands. I tried to keep him cooled off with a cold washcloth, but I think that was more for me than him.
I finally called the MHO office (after hours) and the nurse on-call gave me a call right back. She told me to wait until he had gone 10 minutes or so without vomiting and to double up on some of his anti-nausea meds. I also started the CPT-11 Imodium protocol which basically means I have to give Imodium every two hours continuously until he has had no diarrhea for 12 hours. Let me just say, that is a lot of Imodium.
Sometime after midnight, he managed to get the anti-nausea/anti-emetic meds down and they stayed down. I think that was our turning point.
At one point I can remember thinking to myself that I was so happy he had put on 20 pounds while on the other chemo protocol, because that was already melting away before my eyes. His legs, arms, and booty look so thin already. I just prayed and prayed that it wouldn’t continue like this for the next chemo rounds. I could sense that Johnny was feeling beaten down from being so sick so soon. It was on his face, and in my heart.
As his wife, there are so many times that I feel so completely helpless. I can’t take it away, I can’t make it better, I can’t stop it from happening. I just have to concentrate on doing what I can do: keeping his cup filled, giving his meds on time, warming up his feet before bed, and telling him I love him.
No matter what I do to try to make him comfy, he always says, “Thank you.” Most of the time, that makes me cry. I usually say something like, “You don’t have to thank me.” And he always say, “Yes, I do.”
Man, I love him.
So, during the night last night, I woke him every couple hours for his Imodium pills. When he would take them, I would tell him to drink as much as he possibly could. I think he actually managed about 12 ounces through the night. I was really happy with that.
When he woke this morning (for more pills) he said he felt a lot better already. He basically stayed in bed until about 1:30, when I told him he really needed a shower. No, really. Bad. I envisioned those prison movies when they hose down the new detainees. That’s the kind of shower he needed.
We settled for one at our house. I put a step stool in the shower for him to sit on and he actually managed very nicely. He said that made a huge difference in how he felt. After he rested for a little bit, I gave him a delightful pedicure (DON’T GET ME STARTED ON NASTY FEET!) and then made him some soup for lunch. Ok, well, my dad made the soup, but I warmed it up to the exact right temperature. He ate a little and had a bit more to drink. I was satisfied and told him if he kept drinking throughout the day, I wouldn’t nag.
Basically, that was all he ate today, but he’s had almost 40 ounces of fluids. Probably not even close to re-hydrated, but we are still walking a fine line here.
He is already in bed for the night (8:30), but I will force fluids on him when I wake him for the Imodium and other meds he still has to take.
I’m hoping (and praying) that tomorrow will have a more normal rhythm to it, for his sake.
Tuesday, February 23, 2010
Staple Removal
Ok, seriously. He's a wimp.
I really hate to say it, but lets just call it what it is, people. Fine, he's gone through a lot in the past 8 months, but PUH-LEASE!
I knew yesterday was going to be tough and that it wouldn't be easy to convince him that the time was right for the staples to come out (past due, if you really want my honest opinion). So, late in the afternoon after a stressful day at the infusion center (see yesterday's post) I gave him the warning that the staples were absolutely coming out tonight. I wouldn't bug him about when; I left that up to him. Whenever he was ready, he was to hop in a hot shower and scrub the incision area with some scrub brushes provided by the hospital. There were several small scab areas (yuck, I know I said 'scab') that needed to get cleaned off, and two large areas of scabbing that were hiding the staples underneath.
Finally, at about 10 p.m. he decided to take a shower. He wasn't rushing into it at all. He took a nice long shower and did a great job of scrubbing his staple zipper clean.
Then the excuses started. "Not yet, I'm cold."
"Let me just lay down for a couple minutes."
"I need something to drink."
"After the next set of ice dancers is done."
I am absolutely not kidding. Each and every one of those excuses came out of his mouth. Honest to blog.
When he was finally ready to let me start, I cleaned off the area with some sterile soap and was ready to start yanking - - - I mean, carefully removing the staples. Then he tells me, "Only do five, and then I need a break." Really? This is going to take all night. So I am poised and ready to take out the very first one and he says, "Hold on, I think I might have to throw up." ARE. YOU. KIDDING. ME.
Now let me stop right here and tell you: I was trying sooooooo hard to be patient, really I was. But it was going on 11 p.m. and I was getting tired and wanted to crawl in bed myself. It made me remember when the boys were little and they tried all the delay tactics so that they wouldn't have to go to bed. Not to mention that the only thing on the Olympics was the ice dancing finals, which was torture enough for one evening. Fine. I did it his way.
After over an hour of preparation, I finally took out the first staple. It came out like a hot knife slips through butter. Johnny was all tensed up, with the tail of his shirt in his mouth and grimmacing like you wouldn't believe. One down.
I took out another 4 staples and just like he asked, we took a break. I had to sit through an entire ice dancing performance before he was ready to go again. "Just do up to my belly button and then stop for another break." Uh-huh.
Five more staples out. Then I announce that the next few are going to be "doozies" because they are around the belly button and they have gone deep and are crusted over with scab. I know, yummy, right? "Wait, wait. I need a drink."
I needed a drink at this point, too, but it certainly wasn't 7-Up that I wanted.
We had to wait through two ice dancing couples before I could move on. "Ok, you can go now."
Now I have to admit, the belly button staples were tough to get out. It couldn't have been comfortable with me digging around, but they came out and Johnny didn't even cry.
But, you guessed it. Another break. At this point we have about 15 staples removed and about 40 to go. I told him that the next ones were a "piece of cake" and that I was going to go fast. I actually got another eight or nine out before I had to stop. Short break this time, and then I started in again. I went as fast as I could without drawing attention to the actual number of staples that were coming out. I really felt like he was focusing too much on the number of staples, rather than the ease with which they were being removed.
Finally when we were on the home stretch, I lied to him. I said, "Only 10 more to go, honey." He never looked down or even opened his eyes, so I knew I could get away with it. There were actually only 5 more. I counted down while he chewed on his shirt tail: 10, 9, 8, 7, 6, 5 . . . and when I said "DONE!" He was all surprised and confused. He said, "I thought you said ten!" "I lied."
Honestly, I worked up a sweat in the 75 minutes it took to take 50-something staples out.
Finally, I gave it a good once over with an anti-bacterial/anti-microbial scrub and then covered it lightly with some gauze, just so the little bit of ooze from the staples being removed wouldn't get on his jammies. Then I got him another drink, gave him his pills for the night and tucked him in bed.
"Call my mom and tell her they are out."
"Seriously, Johnny, it is midnight. She won't be up."
"Yes, she will. I told her I would call. She'll be up."
So I called Ginger and told her what a good boy he was and that she raised such a bwave widdle man.
The end.
I really hate to say it, but lets just call it what it is, people. Fine, he's gone through a lot in the past 8 months, but PUH-LEASE!
I knew yesterday was going to be tough and that it wouldn't be easy to convince him that the time was right for the staples to come out (past due, if you really want my honest opinion). So, late in the afternoon after a stressful day at the infusion center (see yesterday's post) I gave him the warning that the staples were absolutely coming out tonight. I wouldn't bug him about when; I left that up to him. Whenever he was ready, he was to hop in a hot shower and scrub the incision area with some scrub brushes provided by the hospital. There were several small scab areas (yuck, I know I said 'scab') that needed to get cleaned off, and two large areas of scabbing that were hiding the staples underneath.
Finally, at about 10 p.m. he decided to take a shower. He wasn't rushing into it at all. He took a nice long shower and did a great job of scrubbing his staple zipper clean.
Then the excuses started. "Not yet, I'm cold."
"Let me just lay down for a couple minutes."
"I need something to drink."
"After the next set of ice dancers is done."
I am absolutely not kidding. Each and every one of those excuses came out of his mouth. Honest to blog.
When he was finally ready to let me start, I cleaned off the area with some sterile soap and was ready to start yanking - - - I mean, carefully removing the staples. Then he tells me, "Only do five, and then I need a break." Really? This is going to take all night. So I am poised and ready to take out the very first one and he says, "Hold on, I think I might have to throw up." ARE. YOU. KIDDING. ME.
Now let me stop right here and tell you: I was trying sooooooo hard to be patient, really I was. But it was going on 11 p.m. and I was getting tired and wanted to crawl in bed myself. It made me remember when the boys were little and they tried all the delay tactics so that they wouldn't have to go to bed. Not to mention that the only thing on the Olympics was the ice dancing finals, which was torture enough for one evening. Fine. I did it his way.
After over an hour of preparation, I finally took out the first staple. It came out like a hot knife slips through butter. Johnny was all tensed up, with the tail of his shirt in his mouth and grimmacing like you wouldn't believe. One down.
I took out another 4 staples and just like he asked, we took a break. I had to sit through an entire ice dancing performance before he was ready to go again. "Just do up to my belly button and then stop for another break." Uh-huh.
Five more staples out. Then I announce that the next few are going to be "doozies" because they are around the belly button and they have gone deep and are crusted over with scab. I know, yummy, right? "Wait, wait. I need a drink."
I needed a drink at this point, too, but it certainly wasn't 7-Up that I wanted.
We had to wait through two ice dancing couples before I could move on. "Ok, you can go now."
Now I have to admit, the belly button staples were tough to get out. It couldn't have been comfortable with me digging around, but they came out and Johnny didn't even cry.
But, you guessed it. Another break. At this point we have about 15 staples removed and about 40 to go. I told him that the next ones were a "piece of cake" and that I was going to go fast. I actually got another eight or nine out before I had to stop. Short break this time, and then I started in again. I went as fast as I could without drawing attention to the actual number of staples that were coming out. I really felt like he was focusing too much on the number of staples, rather than the ease with which they were being removed.
Finally when we were on the home stretch, I lied to him. I said, "Only 10 more to go, honey." He never looked down or even opened his eyes, so I knew I could get away with it. There were actually only 5 more. I counted down while he chewed on his shirt tail: 10, 9, 8, 7, 6, 5 . . . and when I said "DONE!" He was all surprised and confused. He said, "I thought you said ten!" "I lied."
Honestly, I worked up a sweat in the 75 minutes it took to take 50-something staples out.
Finally, I gave it a good once over with an anti-bacterial/anti-microbial scrub and then covered it lightly with some gauze, just so the little bit of ooze from the staples being removed wouldn't get on his jammies. Then I got him another drink, gave him his pills for the night and tucked him in bed.
"Call my mom and tell her they are out."
"Seriously, Johnny, it is midnight. She won't be up."
"Yes, she will. I told her I would call. She'll be up."
So I called Ginger and told her what a good boy he was and that she raised such a bwave widdle man.
The end.
Monday, February 22, 2010
Not Completely According to Plan #1
Here we go again with another "Good News, Bad News" scenario.
Good News: Johnny did receive chemo today.
Bad News: Not through his newly acquired Hepatic Artery Infusion Pump.
If we put a positive twist on this, it really isn't all bad. When we got to the infusion center today, they drew labs first thing, as always. Good news: they accessed his port with no trouble whatsoever and they were able to draw labs from the port, so no extra pokes were necessary.
While we waited for the lab values, they hung some fluids to hydrate Johnny. Always a good thing.
Then the labs came back and they showed that the liver enzymes were elevated. This meant that we couldn't add the chemo agent to the pump today. It would be a little too much for the healing liver to handle. The elevation probably came from the fact that Dr. House had to root around in there when he took out one of the tumors for biopsy. Also, in reading about the pump placement and chemo procedures, it says that chemo should begin 6-8 weeks after pump placement to allow for proper healing. Obviously, due to the fact that Johnny's tumors are aggressive we wanted to get chemo going as soon as possible. He is only 2 weeks post-op, so it stands to reason that the enzymes would still be elevated. We will try again next Monday.
While we were there, he did receive the systemic infusion through his port. The initial infusion went in quite slow (to watch for reactions) and we were there for about 3 hours. I feel better knowing that at least we have something in there attacking the cancer.
Johnny was very nervous about the whole process today. I felt really bad for him. Keep in mind, the MHO office hasn't cared for a HAI pump patient for over 5 years. This was the first pump placed at IU Hospital. EVER. So there was a little apprehension that the staff would be able to handle filling the reservoir. I should add here that even though he couldn't have the pump filled with chemo agent, they still had to "flush" the reservoir so that it doesn't clot off.
It really didn't help that of the two nurses accessing the pump, one has done it before (albeit 5 years ago) and the other was learning. I had the most recent experience with it by watching Dr. House do the nuclear medicine test while we were in Indy.
They had everything set up and Johnny's belly prepped and draped and the "learning" nurse was holding the "How to Access the Codman Hepatic Artery Infusion Pump" instruction sheet. Seriously. The other nurse was scrubbed in and explaining things as she went along. She did have to reference the instruction sheet to figure out if there were any differences in the two needles supplied in the access kit. I had to explain the difference between the "bolus" needle and the "access" needle. Good thing I paid attention in Indy.
To Johnny, this was completely overwhelming and he felt like quite the guinea pig. At one point he said that he almost told them to hand me the needle and let me do it! Wow, that is huge for him. He usually doesn't like me to participate in the procedures that are being performed on him, much to my dismay.
From my perspective, which I later explained to Johnny, this in no way meant they weren't prepared for him. In the cath lab there are procedures that are performed so infrequently that it is easy to lose expertise with that one procedure. There are many times that we have to ask someone else to come in for extra help, or to reference packages and such. Once we get going, it is like the old "riding the bike" thing. You remember and move on.
In the end, the two girls accessed his pump with no problems whatsoever. As a matter of fact, they did it quicker than Dr. House did in Indianapolis. (Although Dr. House did draw a bullseye for them, so there wasn't really any fishing around.) they drained the remaining saline from the fill in Indy and then refilled it again with more flush. The procedure, although stressful, was not painful for Johnny at all.
Tonight Johnny is feeling the initial nausea from the new systemic chemo (agent called CPT-11). We have loaded him with the anti-emetics and anti-nausea meds and are hoping that the firerhea (my newly created word for fire and diarrhea) is kept at bay. We have supplies at the ready for that, too.
We are going to take out the staples tonight, too. That will have to be a blog entry all on its own, I have a feeling. :)
We now come to the point in tonight's blog entry that I start the prayer request thing. Please pray for his liver enzymes to come down so that we can use the pump next time. Also, for the nausea/vomiting/firerhea to be kept to a minimum and that he will be able to get up and around quickly.
You might send up a prayer that the staples come out easily tonight, too. We had a test run last night (he let me take out the lowest 7 staples that were right at his underwear line) and he acted like I was killing him. Then afterwards was all, "Oh, that wasn't really painful it just made me nervous." Such drama. Only 49 more to go!
Good News: Johnny did receive chemo today.
Bad News: Not through his newly acquired Hepatic Artery Infusion Pump.
If we put a positive twist on this, it really isn't all bad. When we got to the infusion center today, they drew labs first thing, as always. Good news: they accessed his port with no trouble whatsoever and they were able to draw labs from the port, so no extra pokes were necessary.
While we waited for the lab values, they hung some fluids to hydrate Johnny. Always a good thing.
Then the labs came back and they showed that the liver enzymes were elevated. This meant that we couldn't add the chemo agent to the pump today. It would be a little too much for the healing liver to handle. The elevation probably came from the fact that Dr. House had to root around in there when he took out one of the tumors for biopsy. Also, in reading about the pump placement and chemo procedures, it says that chemo should begin 6-8 weeks after pump placement to allow for proper healing. Obviously, due to the fact that Johnny's tumors are aggressive we wanted to get chemo going as soon as possible. He is only 2 weeks post-op, so it stands to reason that the enzymes would still be elevated. We will try again next Monday.
While we were there, he did receive the systemic infusion through his port. The initial infusion went in quite slow (to watch for reactions) and we were there for about 3 hours. I feel better knowing that at least we have something in there attacking the cancer.
Johnny was very nervous about the whole process today. I felt really bad for him. Keep in mind, the MHO office hasn't cared for a HAI pump patient for over 5 years. This was the first pump placed at IU Hospital. EVER. So there was a little apprehension that the staff would be able to handle filling the reservoir. I should add here that even though he couldn't have the pump filled with chemo agent, they still had to "flush" the reservoir so that it doesn't clot off.
It really didn't help that of the two nurses accessing the pump, one has done it before (albeit 5 years ago) and the other was learning. I had the most recent experience with it by watching Dr. House do the nuclear medicine test while we were in Indy.
They had everything set up and Johnny's belly prepped and draped and the "learning" nurse was holding the "How to Access the Codman Hepatic Artery Infusion Pump" instruction sheet. Seriously. The other nurse was scrubbed in and explaining things as she went along. She did have to reference the instruction sheet to figure out if there were any differences in the two needles supplied in the access kit. I had to explain the difference between the "bolus" needle and the "access" needle. Good thing I paid attention in Indy.
To Johnny, this was completely overwhelming and he felt like quite the guinea pig. At one point he said that he almost told them to hand me the needle and let me do it! Wow, that is huge for him. He usually doesn't like me to participate in the procedures that are being performed on him, much to my dismay.
From my perspective, which I later explained to Johnny, this in no way meant they weren't prepared for him. In the cath lab there are procedures that are performed so infrequently that it is easy to lose expertise with that one procedure. There are many times that we have to ask someone else to come in for extra help, or to reference packages and such. Once we get going, it is like the old "riding the bike" thing. You remember and move on.
In the end, the two girls accessed his pump with no problems whatsoever. As a matter of fact, they did it quicker than Dr. House did in Indianapolis. (Although Dr. House did draw a bullseye for them, so there wasn't really any fishing around.) they drained the remaining saline from the fill in Indy and then refilled it again with more flush. The procedure, although stressful, was not painful for Johnny at all.
Tonight Johnny is feeling the initial nausea from the new systemic chemo (agent called CPT-11). We have loaded him with the anti-emetics and anti-nausea meds and are hoping that the firerhea (my newly created word for fire and diarrhea) is kept at bay. We have supplies at the ready for that, too.
We are going to take out the staples tonight, too. That will have to be a blog entry all on its own, I have a feeling. :)
We now come to the point in tonight's blog entry that I start the prayer request thing. Please pray for his liver enzymes to come down so that we can use the pump next time. Also, for the nausea/vomiting/firerhea to be kept to a minimum and that he will be able to get up and around quickly.
You might send up a prayer that the staples come out easily tonight, too. We had a test run last night (he let me take out the lowest 7 staples that were right at his underwear line) and he acted like I was killing him. Then afterwards was all, "Oh, that wasn't really painful it just made me nervous." Such drama. Only 49 more to go!
Sunday, February 21, 2010
Begin Again
Not much to report from here. Just wanted to let everyone know that Johnny is getting around a little quicker with each passing day. He is feeling pretty good overall, and his energy level is definitely getting better.
Tomorrow at 9 a.m. he starts his chemo again. We have stocked up on all the recommended supplies and I feel we are as ready as we can be. I've worked this weekend on convincing him (nagging) to drink lots of fluid in anticipation of the expected side effect of diarrhea. Dehydration can come quickly and we really want to avoid that at all cost.
Staples are supposed to come out tomorrow. I'll probably take care of that after chemo. That is too much to put on him first thing in the morning.
If you happen to look at the clock at 9 a.m., just give a little shout out to the Good Man Upstairs. He'll be expecting your call.
Tomorrow at 9 a.m. he starts his chemo again. We have stocked up on all the recommended supplies and I feel we are as ready as we can be. I've worked this weekend on convincing him (nagging) to drink lots of fluid in anticipation of the expected side effect of diarrhea. Dehydration can come quickly and we really want to avoid that at all cost.
Staples are supposed to come out tomorrow. I'll probably take care of that after chemo. That is too much to put on him first thing in the morning.
If you happen to look at the clock at 9 a.m., just give a little shout out to the Good Man Upstairs. He'll be expecting your call.
Thursday, February 18, 2010
Ready for chemo -- again
Today was our first visit with Dr. Ansari since surgery. It is always so nice to see him, even if it was basically so he could check out Johnny’s belly zipper.
He reviewed the notes that Dr. House had sent him and everything was great. He had the results from the biopsies of everything they took out. The nodule that remained in the colon was completely free of cancer, just remnant tissue. Wheeeewww! The gallbladder did have stones, but nothing out of the ordinary. The lymph nodes around the liver (which was a little nagging worry in the back of my brain) were completely clear as well.
So, the liver remains the nasty culprit in this mess. Dr. Ansari told Johnny, “You are very strange. My chemo worked so well in your colon, but your liver didn’t like it.” We reviewed the chemotherapy agent for the HAI pump, which is called FUDR. It is in the same family of agents as the 5-FU that he came home with on the pump during his first round of chemo. FUDR has shown a 60-70% response rate in the liver when infused through the HAI pump. Keep in mind, this response rate is for all comers. Not just healthy 43-year-old butt-smokin’ hot, scar sportin’ hotties. It includes everyone. We are not so crazy as to think that Johnny’s odds are exponentially increased, but we do think his age and overall good health gives him the best possible hope for the best possible outcome.
He will also receive a systemic agent through his existing port (Dr. Ansari feels this is the icing on the cake) called CPT-11. I haven’t yet done as much research on this agent, but believe you me I will! The little I do know about it is that the major side effect is “significant and dehydrating diarrhea”. That just sounds like something to look forward to. We will leave it up to Johnny to decide which is worse to deal with, the gut-busting constipation from the first go-round, or the booty-burning diarrhea he has to look forward to with this new stuff. His little tushy just can’t get a break!
Chemo is scheduled to begin again on Monday, Feb 22nd. He will get the infusion pump reservoir filled and have a 2 hour infusion through his port. The schedule is the same as last time, every other Monday. Unfortunately, we have no idea how long chemo will take. Johnny will receive intermittent scans to see what the reaction of the liver has been. As long as the tumors continue to shrink, the chemo continues. If the tumors go away completely, then the pump stays in for a while to make sure nothing comes back and eventually will then be removed. If the tumors shrink but stop at a certain point and don't shrink any further, we head back to Indy for resection of the remaining tumors and discuss future options. We are praying for and believe that complete resolution of the tumors and "peppercorns" is a possibility and we look forward to the day that we get the "all clear".
We also found out that Johnny will not be able to sit in a hot tub, bath tub, or fly in an airplane while he is receiving chemo through the pump. Any dramatic changes in body temperature or pressure will dump the entire reservoir of chemo into his liver -- and we really don't want to piss the liver off any more than it already is. This might not be such hard news for the majority of people to handle, but I have to tell you - Johnny is the bath-taking-est person I have ever met. He takes AT LEAST one bath a day, sometimes two! He loves a good soak in the tub. We had a hot tub for 13 years, but it petered out 2 years ago and we hadn't yet replaced it. We had actually considered buying one this spring because we loved it so much. Now, it just seems cruel. I told Johnny that I will buy him the hot tub of his dreams when he is all better.
We spoke at length with two of the infusion nurses. They both have prior experience with filling the pumps, which helped increase my confidence level. I asked them if they had the pump rep coming, and they had already made the arrangements. I also said that I want the supplies ordered and over-nighted and Johnny’s name clearly labeled on them so they don’t get accidentally used for random procedures. I know I sound bossy, but they really didn’t seem too bothered by my list of demands. I actually watched Dr. House do the Nuclear Medicine procedure in Indy, and for all my medical friends out there you know what I mean when I say, “See one, do one, teach one.” I’m not afraid to push them out of the way and say, “Hand me that needle!” Johnny would probably never let me come to another appointment of any kind if I actually did that!
I should just be happy that I get to remove his staples. It is a little unnerving (to him) that I am so excited to take them out.
After the office visit, Johnny wanted to get his daily exercise by roaming around Bowne (where he works). It was so nice for him to see all of his friends. Johnny is such a social person (duh!), that it has been tough on him to not connect with his friends and co-workers on a daily basis. It made me so happy to see everyone’s response to him stopping by. I could tell that they were genuinely happy to see how well he is getting around and every single person he encountered hugged him. I can tell others appreciate the great guy that I get to call my own. It was nice. When we got back in the car after our visit, Johnny thanked me for taking him there. I could tell that it was important to him.
This evening we had several friends stop by for meal deliveries, chats, and puppy booty calls. Dave, Soleil is still crying and sniffing at the door looking for Oscar. Serious chemistry, don’t you think?
Dave Balog, thanks so much for the chicken soup. We swear by it at our house. Johnny had a little bowl before bed to settle his tummy. Just what the doctor ordered!
Thanks to Amy Gourlay, and Connie Davis for the food deliveries! Again, it is so comforting to have a decent meal without the stress that goes in to not only making the food, but the scary trips to Wal-Mart to buy the stuff!
We continue to be surrounded and upheld by our friends, family and community. We thank you all so much.
He reviewed the notes that Dr. House had sent him and everything was great. He had the results from the biopsies of everything they took out. The nodule that remained in the colon was completely free of cancer, just remnant tissue. Wheeeewww! The gallbladder did have stones, but nothing out of the ordinary. The lymph nodes around the liver (which was a little nagging worry in the back of my brain) were completely clear as well.
So, the liver remains the nasty culprit in this mess. Dr. Ansari told Johnny, “You are very strange. My chemo worked so well in your colon, but your liver didn’t like it.” We reviewed the chemotherapy agent for the HAI pump, which is called FUDR. It is in the same family of agents as the 5-FU that he came home with on the pump during his first round of chemo. FUDR has shown a 60-70% response rate in the liver when infused through the HAI pump. Keep in mind, this response rate is for all comers. Not just healthy 43-year-old butt-smokin’ hot, scar sportin’ hotties. It includes everyone. We are not so crazy as to think that Johnny’s odds are exponentially increased, but we do think his age and overall good health gives him the best possible hope for the best possible outcome.
He will also receive a systemic agent through his existing port (Dr. Ansari feels this is the icing on the cake) called CPT-11. I haven’t yet done as much research on this agent, but believe you me I will! The little I do know about it is that the major side effect is “significant and dehydrating diarrhea”. That just sounds like something to look forward to. We will leave it up to Johnny to decide which is worse to deal with, the gut-busting constipation from the first go-round, or the booty-burning diarrhea he has to look forward to with this new stuff. His little tushy just can’t get a break!
Chemo is scheduled to begin again on Monday, Feb 22nd. He will get the infusion pump reservoir filled and have a 2 hour infusion through his port. The schedule is the same as last time, every other Monday. Unfortunately, we have no idea how long chemo will take. Johnny will receive intermittent scans to see what the reaction of the liver has been. As long as the tumors continue to shrink, the chemo continues. If the tumors go away completely, then the pump stays in for a while to make sure nothing comes back and eventually will then be removed. If the tumors shrink but stop at a certain point and don't shrink any further, we head back to Indy for resection of the remaining tumors and discuss future options. We are praying for and believe that complete resolution of the tumors and "peppercorns" is a possibility and we look forward to the day that we get the "all clear".
We also found out that Johnny will not be able to sit in a hot tub, bath tub, or fly in an airplane while he is receiving chemo through the pump. Any dramatic changes in body temperature or pressure will dump the entire reservoir of chemo into his liver -- and we really don't want to piss the liver off any more than it already is. This might not be such hard news for the majority of people to handle, but I have to tell you - Johnny is the bath-taking-est person I have ever met. He takes AT LEAST one bath a day, sometimes two! He loves a good soak in the tub. We had a hot tub for 13 years, but it petered out 2 years ago and we hadn't yet replaced it. We had actually considered buying one this spring because we loved it so much. Now, it just seems cruel. I told Johnny that I will buy him the hot tub of his dreams when he is all better.
We spoke at length with two of the infusion nurses. They both have prior experience with filling the pumps, which helped increase my confidence level. I asked them if they had the pump rep coming, and they had already made the arrangements. I also said that I want the supplies ordered and over-nighted and Johnny’s name clearly labeled on them so they don’t get accidentally used for random procedures. I know I sound bossy, but they really didn’t seem too bothered by my list of demands. I actually watched Dr. House do the Nuclear Medicine procedure in Indy, and for all my medical friends out there you know what I mean when I say, “See one, do one, teach one.” I’m not afraid to push them out of the way and say, “Hand me that needle!” Johnny would probably never let me come to another appointment of any kind if I actually did that!
I should just be happy that I get to remove his staples. It is a little unnerving (to him) that I am so excited to take them out.
After the office visit, Johnny wanted to get his daily exercise by roaming around Bowne (where he works). It was so nice for him to see all of his friends. Johnny is such a social person (duh!), that it has been tough on him to not connect with his friends and co-workers on a daily basis. It made me so happy to see everyone’s response to him stopping by. I could tell that they were genuinely happy to see how well he is getting around and every single person he encountered hugged him. I can tell others appreciate the great guy that I get to call my own. It was nice. When we got back in the car after our visit, Johnny thanked me for taking him there. I could tell that it was important to him.
This evening we had several friends stop by for meal deliveries, chats, and puppy booty calls. Dave, Soleil is still crying and sniffing at the door looking for Oscar. Serious chemistry, don’t you think?
Dave Balog, thanks so much for the chicken soup. We swear by it at our house. Johnny had a little bowl before bed to settle his tummy. Just what the doctor ordered!
Thanks to Amy Gourlay, and Connie Davis for the food deliveries! Again, it is so comforting to have a decent meal without the stress that goes in to not only making the food, but the scary trips to Wal-Mart to buy the stuff!
We continue to be surrounded and upheld by our friends, family and community. We thank you all so much.
Wednesday, February 17, 2010
Wal-Mart After Dark
There are three places on the planet no God-fearin’ person should visit after 8 p.m.: Duval Street in Key West, Bourbon Street in New Orleans, and Wal-Mart in Niles.
We knew after surgery that it would be super important to get Johnny up and moving as soon as possible. While he was at IU, he walked laps around the unit and did fantastic considering the zipper he has up the front of his torso. After coming home on Saturday, I told him he had the weekend to feel better and sleep, but once Monday came we were heading back to the YMCA.
We set our goal for the first time at the Y to once around the track (it is a 1/10th mile indoor track). I figured it would loosen him up a bit and get things moving again. We agreed we would stop whenever he was ready. In true Johnny fashion, he managed to walk four full laps before his calves started to burn. After the first lap, he complained that he was having burning and pain in his arms. I looked at him and laughed (‘cuz I’m super compassionate like that). He had his shoulders and arms all hunched up and wasn’t moving them at all while he walked. I said, “Dude, relax and move your arms. Shake them out a little.” He was just so concerned about moving his legs around that track that his arms completely forgot they could move independently. Once he shook them out, they were fine. When we were at the 3 ½ lap mark, an elderly gentleman (OK, seriously he was like 90!) lapped us. Again, I laughed and Johnny’s comment was, “He’s sprinting.” We saw a bunch of friends at the Y, which was nice. Thanks for the encouragement, everyone!
Tuesday I spent most of the day trying to deal with the insurance company, and fortunately I think everything has worked itself out, but it took the entire day. Because of that, we didn’t make our trip to the YMCA. I had a few things that I needed at good old Wal-Mart, and Johnny decided that would be his exercise for the day. It was about 8:00 pm, and believe me when I say I know where the pictures from the “People Of Wal-Mart” emails originate. OMG. It seems that the tooth-to-tattoo ratio in our Wal-Mart is approximately 1:15. And for some reason, the higher the T/T ratio the more important they think their conversations are, and the louder they speak. Why people drag their tired children to Wal-Mart at bedtime and expect them to behave and then SCREAM at them to “shut yo’ mouth” is just amazing to me. I could go on and on, but I think you get the picture. We made it back to the car safely, and Johnny mentioned that we might want to stick with the Y from now on.
Today, Johnny’s cousin -- also Johnny, aka Johnny Robert -- stopped by with his son, Dillon, for a visit. Dillon is a hoot and sat on my lap and played the “Opposite” game and the “Name Parts of Your Body” game. Then he told me he liked my boobs. It seems like the attention is usually on Johnny when we get visitors (as it should) so I was super psyched that Dillon paid attention to me, even if it was my frontal region. Come back any time, Dillon!
Overall, Johnny is still tired most of the time, although I see his energy level getting better each day. His incision area still looks fantastic and I can’t wait to get my hands on those staples!
We see Dr. Ansari tomorrow at 9:45, just for an update on how things went with the surgery and HAI pump placement. Hopefully, we have our ducks in a row for starting chemo at some point next week. I recommended that they ask the pump rep to stop in for a little refresher course on filling the reservoir, and wouldn’t you know -- they took me up on my suggestion. I’m hoping that he will be there for the first filling, but as long as they get an in-service, I’m good with that. I talked to one of the infusion nurses that was there when the last pump patient was seen about 10 years ago, and the patient is still with us. Talk about relief! That was the best news I’ve had in 7 months!
Thanks to everyone providing meals again to our family. Barb Garrard, Linda Arnold, Amy Rudlaff, Joann Hathcoat, Michelle Nichols, Pam Reed, and Tori Davies you guys are great! It is nice to know that my family is being fed great meals, even when I am too overwhelmed with everything else to concentrate on making a meal. Truly a blessing.
Please continue to pray. Our prayers are now turning towards success of the chemotherapy. We know that the chemo has a lot of work to do, but firmly believe that it can handle the task, especially when backed up by the prayers of our friends and family.
We knew after surgery that it would be super important to get Johnny up and moving as soon as possible. While he was at IU, he walked laps around the unit and did fantastic considering the zipper he has up the front of his torso. After coming home on Saturday, I told him he had the weekend to feel better and sleep, but once Monday came we were heading back to the YMCA.
We set our goal for the first time at the Y to once around the track (it is a 1/10th mile indoor track). I figured it would loosen him up a bit and get things moving again. We agreed we would stop whenever he was ready. In true Johnny fashion, he managed to walk four full laps before his calves started to burn. After the first lap, he complained that he was having burning and pain in his arms. I looked at him and laughed (‘cuz I’m super compassionate like that). He had his shoulders and arms all hunched up and wasn’t moving them at all while he walked. I said, “Dude, relax and move your arms. Shake them out a little.” He was just so concerned about moving his legs around that track that his arms completely forgot they could move independently. Once he shook them out, they were fine. When we were at the 3 ½ lap mark, an elderly gentleman (OK, seriously he was like 90!) lapped us. Again, I laughed and Johnny’s comment was, “He’s sprinting.” We saw a bunch of friends at the Y, which was nice. Thanks for the encouragement, everyone!
Tuesday I spent most of the day trying to deal with the insurance company, and fortunately I think everything has worked itself out, but it took the entire day. Because of that, we didn’t make our trip to the YMCA. I had a few things that I needed at good old Wal-Mart, and Johnny decided that would be his exercise for the day. It was about 8:00 pm, and believe me when I say I know where the pictures from the “People Of Wal-Mart” emails originate. OMG. It seems that the tooth-to-tattoo ratio in our Wal-Mart is approximately 1:15. And for some reason, the higher the T/T ratio the more important they think their conversations are, and the louder they speak. Why people drag their tired children to Wal-Mart at bedtime and expect them to behave and then SCREAM at them to “shut yo’ mouth” is just amazing to me. I could go on and on, but I think you get the picture. We made it back to the car safely, and Johnny mentioned that we might want to stick with the Y from now on.
Today, Johnny’s cousin -- also Johnny, aka Johnny Robert -- stopped by with his son, Dillon, for a visit. Dillon is a hoot and sat on my lap and played the “Opposite” game and the “Name Parts of Your Body” game. Then he told me he liked my boobs. It seems like the attention is usually on Johnny when we get visitors (as it should) so I was super psyched that Dillon paid attention to me, even if it was my frontal region. Come back any time, Dillon!
Overall, Johnny is still tired most of the time, although I see his energy level getting better each day. His incision area still looks fantastic and I can’t wait to get my hands on those staples!
We see Dr. Ansari tomorrow at 9:45, just for an update on how things went with the surgery and HAI pump placement. Hopefully, we have our ducks in a row for starting chemo at some point next week. I recommended that they ask the pump rep to stop in for a little refresher course on filling the reservoir, and wouldn’t you know -- they took me up on my suggestion. I’m hoping that he will be there for the first filling, but as long as they get an in-service, I’m good with that. I talked to one of the infusion nurses that was there when the last pump patient was seen about 10 years ago, and the patient is still with us. Talk about relief! That was the best news I’ve had in 7 months!
Thanks to everyone providing meals again to our family. Barb Garrard, Linda Arnold, Amy Rudlaff, Joann Hathcoat, Michelle Nichols, Pam Reed, and Tori Davies you guys are great! It is nice to know that my family is being fed great meals, even when I am too overwhelmed with everything else to concentrate on making a meal. Truly a blessing.
Please continue to pray. Our prayers are now turning towards success of the chemotherapy. We know that the chemo has a lot of work to do, but firmly believe that it can handle the task, especially when backed up by the prayers of our friends and family.
Sunday, February 14, 2010
There's No Place Like Home
Didn’t Dorothy from Kansas say it best: There’s no place like home.
Even after Dr. House told us not to even ask to go home before 7 days, Wonder Toad showed them that it could be done.
Most of our Niles friends know that a 15-year-old Freshman named Alex Wentz committed suicide. He was lovingly known as Big Mac to all of his Howard Township Baseball family. Big Mac was a great kid and unfortunately had issues that he couldn’t resolve and didn‘t have someone in his life that identified his troubled head/heart. Friday night we had a cry together over Big Mac and the unfairness of it all. Johnny’s emotions were very, very frail on Saturday morning.
On Saturday morning our favorite surgical resident, Dr. Kyle Yancey, stopped in to check on Johnny and said things were looking very good. Johnny told him a bit about the reason for his fragile emotional state and Dr. Yancey said he would talk to Dr. House about letting us go home either Saturday or Sunday. I really thought they would keep him until Sunday, but when Dr. House came in a little while later he gave us our walking papers.
I want to take a minute to talk about the quality of care we received at IU Hospital. It was impressive. From the registration process all the way through discharge we really never had any hold-ups and were surrounded by the greatest people. I mentioned earlier about the nurse that rounded through the surgical suites all day to give the waiting families updates on their loved ones. That was awesome and made the wait much more bearable.
The nursing staff on Johnny’s unit was AMAZING! OK, we had the one chatty nurse (Chatty Kat), but even she was nice. . . she just couldn’t keep her mouth shut or the light off! At least she was nice. We had a total of 6 other nurses during our stay: Stephanie, Colleen, Laura, Jennifer, Melissa, and Brooke.
They were all professional, personable, caring, and intelligent. I never even felt the need to question what was happening. And we all know that I have NO PROBLEM questioning something if it isn’t right. When Johnny finally got to his room Monday night, I was reviewing his drips and noticed that there wasn’t an antibiotic hanging. Ginger and I decided that as soon as the nurse came back in we would jump her - - - I mean, ask her about it. Wouldn’t you know that the next time she entered the room (about 2 minutes later) she was carrying the antibiotic with her. Good thing, too. We were ready for her.
We never, ever, ever had to wait for the call light. Seriously. NEVER.
The only time I had to put on my Pit Bull collar was on Friday night. It was 10 p.m. and Brooke came in to tell us that we had to move to another unit because they needed his bed for someone coming out of ICU. If you can just imagine, I was not at all interested in moving my sleeping Toad to another unit at 11 p.m. As I said earlier, Friday was emotional for Johnny anyway and I was not going to take “NO” for an answer.
Brooke was trying her best to tell me that it wasn’t possible to stay in the room, and I was trying my best to let her know that we had squatter’s rights. So, I did the only thing I felt I could do . . . I asked for the charge nurse. Bruce the charge nurse came in to let me know the reason why Johnny had to move. I told Bruce the reasons why Johnny wasn’t going to move.
Here was the scenario: There was an open room on a med/surg floor for a male patient. There was a male patient coming out of ICU that needed a room because ICU needed to put someone else in that bed. Johnny no longer needed to be monitored, so they wanted him on the med/surg floor, the ICU guy was coming to Johnny’s room and the newbie was going to ICU. I told Bruce that I saw another option: Move ICU guy to med/surg and leave my Johnny out of it. Bruce gave me a quizzical look and then called the charge nurse on med/surg. By golly, wouldn’t you know -- It Worked! I know what most of you are thinking, and you can even ask Johnny: I was really nice about the whole thing and never even had to raise my voice. I was more than willing to, but never actually had to. I thanked Bruce profusely and told him that was my idea of great customer service. I will be writing a letter to the Director of that unit to praise all of the people we encountered. It was a great experience overall.
The residents and med student that rounded on Johnny were the greatest bunch! Dr. Yancey led the team and showed great compassion and great leadership. He is a genuinely caring young man and will be the greatest surgeon when he is finished. I would love to know where he ends up; and I think he will be doing great work in the future. I wish I could remember the other names. I know the third year med student’s name started with a B, and he is from Cameroon, but I’ve drawn a blank and for that I am truly sorry. There were several times that he stopped by on his own because of his class schedule, and he would have to catch up on rounds without the rest of the team. He will also be a great physician and is a kind-hearted and gentle man. He told us that Dr. Yancey is his role model and we agreed that he was worthy of that title. Ginger and I would pack goody bags for them when they rounded at night and you would have thought we were providing them with a steak dinner! More than once they told us it had been their dinner for that night. These guys really work long, hard hours. It gives me a newfound respect for people who decide to become a physician.
We were so impressed with Dr. House as well. We didn’t know it going in (and it wouldn’t have mattered anyway) but Johnny was the first patient that Dr. House put the HAI pump in since he’s been at IU. He placed multitudes at Sloan-Kettering, but Johnny is his poster boy for IU. On Thursday when the Nuclear Medicine team didn’t want to try the infusion study out of fear of messing it up, Dr. House himself came down on Friday morning and did the study. Thankfully, it went BEAUTIFULLY and showed that the liver perfusion is exactly as it should be from the pump. That means the chemo will go to the liver and nowhere else.
We appreciated every visit from Dr. House. He stopped in at least once a day, and sometimes twice. He was always willing to listen to our fears and concerns and addressed them so that when he left we always felt confident again.
When they sprung us on Saturday morning, we were a little surprised. Ginger and I had everything packed and ready to go in short order and waited for Johnny to give us the thumbs-up. He wanted to make sure his tummy was settled enough before we hit the road. Our nurse, Jennifer, made sure we had everything we needed to make the trip, including some really nice pain meds. Thanks, Jennifer! He made the trip without any problems whatsoever. Slept most of the way, actually.
So that brings us back to Niles where Johnny and I have spent the last day trying to catch up on sleep and getting everything put back in order. We are getting there, slowly but surely.
And in case anyone was wondering about how Ginger and I would do for a week in a hospital room with Johnny: I wouldn’t and couldn’t have done it without her. She is an amazing woman whose mission in life is to make things better for the people around her. I love her very much and am so lucky to have a mother-in-law that I can say I very genuinely LOVE! Thanks a million times, Ginger! I love you.
Even after Dr. House told us not to even ask to go home before 7 days, Wonder Toad showed them that it could be done.
Most of our Niles friends know that a 15-year-old Freshman named Alex Wentz committed suicide. He was lovingly known as Big Mac to all of his Howard Township Baseball family. Big Mac was a great kid and unfortunately had issues that he couldn’t resolve and didn‘t have someone in his life that identified his troubled head/heart. Friday night we had a cry together over Big Mac and the unfairness of it all. Johnny’s emotions were very, very frail on Saturday morning.
On Saturday morning our favorite surgical resident, Dr. Kyle Yancey, stopped in to check on Johnny and said things were looking very good. Johnny told him a bit about the reason for his fragile emotional state and Dr. Yancey said he would talk to Dr. House about letting us go home either Saturday or Sunday. I really thought they would keep him until Sunday, but when Dr. House came in a little while later he gave us our walking papers.
I want to take a minute to talk about the quality of care we received at IU Hospital. It was impressive. From the registration process all the way through discharge we really never had any hold-ups and were surrounded by the greatest people. I mentioned earlier about the nurse that rounded through the surgical suites all day to give the waiting families updates on their loved ones. That was awesome and made the wait much more bearable.
The nursing staff on Johnny’s unit was AMAZING! OK, we had the one chatty nurse (Chatty Kat), but even she was nice. . . she just couldn’t keep her mouth shut or the light off! At least she was nice. We had a total of 6 other nurses during our stay: Stephanie, Colleen, Laura, Jennifer, Melissa, and Brooke.
They were all professional, personable, caring, and intelligent. I never even felt the need to question what was happening. And we all know that I have NO PROBLEM questioning something if it isn’t right. When Johnny finally got to his room Monday night, I was reviewing his drips and noticed that there wasn’t an antibiotic hanging. Ginger and I decided that as soon as the nurse came back in we would jump her - - - I mean, ask her about it. Wouldn’t you know that the next time she entered the room (about 2 minutes later) she was carrying the antibiotic with her. Good thing, too. We were ready for her.
We never, ever, ever had to wait for the call light. Seriously. NEVER.
The only time I had to put on my Pit Bull collar was on Friday night. It was 10 p.m. and Brooke came in to tell us that we had to move to another unit because they needed his bed for someone coming out of ICU. If you can just imagine, I was not at all interested in moving my sleeping Toad to another unit at 11 p.m. As I said earlier, Friday was emotional for Johnny anyway and I was not going to take “NO” for an answer.
Brooke was trying her best to tell me that it wasn’t possible to stay in the room, and I was trying my best to let her know that we had squatter’s rights. So, I did the only thing I felt I could do . . . I asked for the charge nurse. Bruce the charge nurse came in to let me know the reason why Johnny had to move. I told Bruce the reasons why Johnny wasn’t going to move.
Here was the scenario: There was an open room on a med/surg floor for a male patient. There was a male patient coming out of ICU that needed a room because ICU needed to put someone else in that bed. Johnny no longer needed to be monitored, so they wanted him on the med/surg floor, the ICU guy was coming to Johnny’s room and the newbie was going to ICU. I told Bruce that I saw another option: Move ICU guy to med/surg and leave my Johnny out of it. Bruce gave me a quizzical look and then called the charge nurse on med/surg. By golly, wouldn’t you know -- It Worked! I know what most of you are thinking, and you can even ask Johnny: I was really nice about the whole thing and never even had to raise my voice. I was more than willing to, but never actually had to. I thanked Bruce profusely and told him that was my idea of great customer service. I will be writing a letter to the Director of that unit to praise all of the people we encountered. It was a great experience overall.
The residents and med student that rounded on Johnny were the greatest bunch! Dr. Yancey led the team and showed great compassion and great leadership. He is a genuinely caring young man and will be the greatest surgeon when he is finished. I would love to know where he ends up; and I think he will be doing great work in the future. I wish I could remember the other names. I know the third year med student’s name started with a B, and he is from Cameroon, but I’ve drawn a blank and for that I am truly sorry. There were several times that he stopped by on his own because of his class schedule, and he would have to catch up on rounds without the rest of the team. He will also be a great physician and is a kind-hearted and gentle man. He told us that Dr. Yancey is his role model and we agreed that he was worthy of that title. Ginger and I would pack goody bags for them when they rounded at night and you would have thought we were providing them with a steak dinner! More than once they told us it had been their dinner for that night. These guys really work long, hard hours. It gives me a newfound respect for people who decide to become a physician.
We were so impressed with Dr. House as well. We didn’t know it going in (and it wouldn’t have mattered anyway) but Johnny was the first patient that Dr. House put the HAI pump in since he’s been at IU. He placed multitudes at Sloan-Kettering, but Johnny is his poster boy for IU. On Thursday when the Nuclear Medicine team didn’t want to try the infusion study out of fear of messing it up, Dr. House himself came down on Friday morning and did the study. Thankfully, it went BEAUTIFULLY and showed that the liver perfusion is exactly as it should be from the pump. That means the chemo will go to the liver and nowhere else.
We appreciated every visit from Dr. House. He stopped in at least once a day, and sometimes twice. He was always willing to listen to our fears and concerns and addressed them so that when he left we always felt confident again.
When they sprung us on Saturday morning, we were a little surprised. Ginger and I had everything packed and ready to go in short order and waited for Johnny to give us the thumbs-up. He wanted to make sure his tummy was settled enough before we hit the road. Our nurse, Jennifer, made sure we had everything we needed to make the trip, including some really nice pain meds. Thanks, Jennifer! He made the trip without any problems whatsoever. Slept most of the way, actually.
So that brings us back to Niles where Johnny and I have spent the last day trying to catch up on sleep and getting everything put back in order. We are getting there, slowly but surely.
And in case anyone was wondering about how Ginger and I would do for a week in a hospital room with Johnny: I wouldn’t and couldn’t have done it without her. She is an amazing woman whose mission in life is to make things better for the people around her. I love her very much and am so lucky to have a mother-in-law that I can say I very genuinely LOVE! Thanks a million times, Ginger! I love you.
Saturday, February 13, 2010
Coming Home!
Just a quick post to let you know:
We are coming home!
Hopefully we will be out of here by about noon. We are soooo happy!
Friday, February 12, 2010
Friday gets an A+
Will you please forgive me if this is a short post tonight? The olympics opening ceremony is on, and I have to check out all the foreign dudes. It is a hobby of mine.
The Brief Version of the past 24 hours:
Johnny had a good nurse and a good night last night.
Went down early for the nuclear scan that was a HUMONGOUS success. Dr. House was pleased.
Had a lovely visit from Jeff and Berniece from Ohio. We love them so much and their visit was just what Johnny needed.
Foley catheter came out, and he was able to potty without any problems afterwards.
Did 4 laps around the unit at Mach 4.
Received a most excellent bathing experience from the Mrs.
Needed a two hour nap after the most excellent bathing experience. (I'm that good.)
Ate mashed potatoes and chicken noodle soup for dinner. Almost 6 whole bites of more-or-less solid food!
And last but not least -- DRUM ROLL, PLEASE! -- he went poo-poo in the big boy potty!
Every single goal accomplished today!We will get an update tomorrow on when we should start thinking about heading home. I hope it is soon. I need to hug my boys. Funny how you miss them when your gone.
Thanks for the continued prayers. They are definitely working! Johnny's stength is increasing by the minute!
Thursday, February 11, 2010
Night Nurses Take Note
Night nurses should not be chatty. And they should have night-vision goggles.
Our nurse last night was very kind, but lacked confidence and had to check and double-check everything time and time again. She had the light on in Johnny’s room MOST of the night and every time something needed to be done, she would start and then go find someone to confirm that she was doing it right. All the while talking, talking, talking.
Needless to say, there was no sleeping through the night last night.
The anesthesiologist arrived first this morning (6:15) and took the epidural out. Not so bad, at first. Then our favorite Chief Surgical Resident, Dr. Yancey, arrived and checked Johnny’s incision and belly. Things all looked really good there. Dr. House came in a little later (7:45) and reminded us that Johnny would be having the nuclear scan to check the pump. He told us how pleased he was with Johnny’s progress and that things were going very well.
After Dr. House left the room, everything seemed to go backwards.
With the epidural out, Johnny’s pain level went through the roof and the PCA pump just wasn’t covering it. His electrolytes were a bit out of whack and when they started infusing the Potassium, it burned the be-jeebies out of his arm. We had to stop the infusion because he literally could not take the pain.
The trip to nuclear medicine was a failure, as well. The technologist wasn’t familiar with accessing the HAI pump and was very forthcoming and honest saying that she needed to call Dr. House because her 10 minute in-service didn’t give her enough confidence to tackle the initial access. I totally respect someone that knows their own limitations and isn’t willing to let their ego get in the way of someone else’s safety. So, we are rescheduled tomorrow at 7:30 when Dr. House can be present.
Once back in the room from that ordeal, Johnny was stressed out and not feeling well at all. He was pale and in pain and I hated every second of it. I couldn’t do anything to make him all better. Ginger and I sat in his dark room for the majority of the day, keeping things quiet so he could just sleep as much as possible.
Finally, at about 2 p.m. he started to come around a little. Toradol was added to his pain regimen and that made a big difference. He finally felt good enough to take a little walk around the unit and did great, walking the whole way on his own strength.
After his walk, he got washed up and sat in his chair for a little while. Instead of heading right back to bed, he chose to take another lap around the unit. I was so proud! Of course, then he was totally spent and got right back in bed.
The evening was so much better than the morning -- thank the Good Lord.
At 7 pm our favorite nurse, Laura, came in to say good-bye and to tell us that she wouldn’t be back until Saturday. We love Laura. She is just the right combination of all the skills and personality that make the perfect nurse. We most likely will be on another unit by Saturday, so that made us sad. We had talked to her earlier in the evening about our trouble during the night before, and before she left she told us that she had taken care of that.
Our new nurse came in just after 7 to introduce herself. This is what I said to her, “Nice to meet you, Melissa. Let me be perfectly honest with you. Last night was terrible. Our nurse talked the whole night and had the lights on more than they were off. Johnny got absolutely no sleep and we just can’t have that tonight. I want to be upfront with you and tell you this because I need it to be very quiet tonight and the lights need to stay off.”
She said, “Thank goodness because I’m not a talker and I do my best work in the dark.”
I like Melissa.
Tonight I headed back to the hotel a little earlier (no real sleep since Tuesday) and have snuggled in to bed. I’m watching Survivor (I hope my kids are, too -- it is our show) and will probably fall asleep in about 10 minutes.
Tomorrow starts early with a second attempt at checking the HAI pump.
By the way, during evening rounds we found out that Johnny is Dr. House’s VERY FIRST pump implant here in Indianapolis. He did hundreds at Memorial Sloan-Kettering, but Johnny is his poster boy! No wonder the nuclear med tech was so freaked out. I am arranging to have the pump rep present in South Bend for his first filling of chemo. I am not taking any chances that someone at MHO hasn’t filled a pump before. I know Dr. Ansari said he could handle it, but that doesn’t necessarily mean the staff can. I’m not naïve enough to think that it will be Dr. Ansari filling the pump every time. I think I will just grab the bull by the horns on this one and make the arrangements myself.
OK, I have to go to sleep now. Thanks for your continued prayers, as always.
Our nurse last night was very kind, but lacked confidence and had to check and double-check everything time and time again. She had the light on in Johnny’s room MOST of the night and every time something needed to be done, she would start and then go find someone to confirm that she was doing it right. All the while talking, talking, talking.
Needless to say, there was no sleeping through the night last night.
The anesthesiologist arrived first this morning (6:15) and took the epidural out. Not so bad, at first. Then our favorite Chief Surgical Resident, Dr. Yancey, arrived and checked Johnny’s incision and belly. Things all looked really good there. Dr. House came in a little later (7:45) and reminded us that Johnny would be having the nuclear scan to check the pump. He told us how pleased he was with Johnny’s progress and that things were going very well.
After Dr. House left the room, everything seemed to go backwards.
With the epidural out, Johnny’s pain level went through the roof and the PCA pump just wasn’t covering it. His electrolytes were a bit out of whack and when they started infusing the Potassium, it burned the be-jeebies out of his arm. We had to stop the infusion because he literally could not take the pain.
The trip to nuclear medicine was a failure, as well. The technologist wasn’t familiar with accessing the HAI pump and was very forthcoming and honest saying that she needed to call Dr. House because her 10 minute in-service didn’t give her enough confidence to tackle the initial access. I totally respect someone that knows their own limitations and isn’t willing to let their ego get in the way of someone else’s safety. So, we are rescheduled tomorrow at 7:30 when Dr. House can be present.
Once back in the room from that ordeal, Johnny was stressed out and not feeling well at all. He was pale and in pain and I hated every second of it. I couldn’t do anything to make him all better. Ginger and I sat in his dark room for the majority of the day, keeping things quiet so he could just sleep as much as possible.
Finally, at about 2 p.m. he started to come around a little. Toradol was added to his pain regimen and that made a big difference. He finally felt good enough to take a little walk around the unit and did great, walking the whole way on his own strength.
After his walk, he got washed up and sat in his chair for a little while. Instead of heading right back to bed, he chose to take another lap around the unit. I was so proud! Of course, then he was totally spent and got right back in bed.
The evening was so much better than the morning -- thank the Good Lord.
At 7 pm our favorite nurse, Laura, came in to say good-bye and to tell us that she wouldn’t be back until Saturday. We love Laura. She is just the right combination of all the skills and personality that make the perfect nurse. We most likely will be on another unit by Saturday, so that made us sad. We had talked to her earlier in the evening about our trouble during the night before, and before she left she told us that she had taken care of that.
Our new nurse came in just after 7 to introduce herself. This is what I said to her, “Nice to meet you, Melissa. Let me be perfectly honest with you. Last night was terrible. Our nurse talked the whole night and had the lights on more than they were off. Johnny got absolutely no sleep and we just can’t have that tonight. I want to be upfront with you and tell you this because I need it to be very quiet tonight and the lights need to stay off.”
She said, “Thank goodness because I’m not a talker and I do my best work in the dark.”
I like Melissa.
Tonight I headed back to the hotel a little earlier (no real sleep since Tuesday) and have snuggled in to bed. I’m watching Survivor (I hope my kids are, too -- it is our show) and will probably fall asleep in about 10 minutes.
Tomorrow starts early with a second attempt at checking the HAI pump.
By the way, during evening rounds we found out that Johnny is Dr. House’s VERY FIRST pump implant here in Indianapolis. He did hundreds at Memorial Sloan-Kettering, but Johnny is his poster boy! No wonder the nuclear med tech was so freaked out. I am arranging to have the pump rep present in South Bend for his first filling of chemo. I am not taking any chances that someone at MHO hasn’t filled a pump before. I know Dr. Ansari said he could handle it, but that doesn’t necessarily mean the staff can. I’m not naïve enough to think that it will be Dr. Ansari filling the pump every time. I think I will just grab the bull by the horns on this one and make the arrangements myself.
OK, I have to go to sleep now. Thanks for your continued prayers, as always.
Wednesday, February 10, 2010
Chicks Dig Scars
I can’t believe that it is already Wednesday. For just sitting around all day staring at Johnny, the time seems to be going by quickly.
Johnny’s big adventure for the day was walking an entire lap around the unit. At first he started out by holding on to me and Laura, the nurse, but by half way around he felt steady enough to let go and fly on his own. Since he still has the epidural in, that was no small feat.
Once he got back to the room, he decided to sit up in the chair for an hour and while he did that I gave him a little bath and loaded him up with lotion. I tried to make it “enjoyable” -- if you know what I mean -- but for some reason Johnny really wasn’t that in to it. Something about that complete abdominal incision that was a total mood killer.
By the way, I counted his staples today. FIFTY-SIX! That’s right, he has 56 staples holding his belly shut and the cute thing is, they curved the incision around his belly button! The incision itself is about 12 inches long and he has another incision on the left where the pump was placed that is about 4 inches. Seriously, chicks dig guys with scars. I told him I’m going to parade him around the beach this summer and I’ll be like, “That’s right, I’m with the dude with the totally hot belly scars!”
He has made a hobby out of his inspirometer (the breathy thingy that keeps you from getting pneumonia) and is a champion at that. He showed off for the respiratory therapist today and she only stayed 30 seconds because she said he had it down pat.
The steady parade of doctors has been very entertaining. Dr. Yancy and his associates (a couple of 2nd-year surgical residents and a 4th-year med student) have stopped in twice a day. I really like Dr. Yancey. He reiterated how well the surgery went and said that the colon was fantastic. Then of course he said, “But you know that your liver is a mess.” And we do. Again he said that if the chemo will work on the big lesions, then the little ones (“innumerable”) will just go away as well. We aren’t supposed to concentrate on the number because if it will work for one it will work for them all. I like his way of thinking.
They stayed and chatted for several minutes tonight and Ginger offered them all chocolate. I think they missed lunch and possibly dinner because they wolfed it down. I’m thinking about making them all peanut butter and jelly sandwiches for tomorrow because they might be working too many hours to actually get any meals in. They really do put in a crazy amount of hours.
The anesthesiologist (NOT Dr. Hotty-With-a-Body) stopped in to check on the epidural and PCA pump. They upped his PCA to every 10 minutes instead of every 15 minutes yesterday, but today he hasn’t needed it nearly as often. I think the epidural was the greatest idea on the planet!
I have to give MAD PROPS to the nursing staff here. We have had the most amazing care. Stephanie, Colleen, Laura, and Kat have been his only nurses so far and I’d like to haul them all home and put them to work at SJRMC. Wow. Do you know that we have not waited on a call light, or any request for more than a minute . . . if that. Each one of these girls has been great and very caring and professional. The charge nurse has stopped in on each shift as well to make sure things are going OK. Also, an administrator (Director of Nursing) stopped in to say hi and to make sure we were being accommodated appropriately. In addition to all of those people, they have a person come in to evaluate you for sleep disorders as one of their Performance Improvement Initiatives. I was totally impressed by that. She told us that so many with sleep apnea go undiagnosed because medical professionals don’t ask the correct questions. Johnny was a “low risk” for sleep apnea. Good to know.
I guess you could say that I have been very impressed with quality of care we have received.
Johnny is sleeping pretty comfortably right now, and will basically be out for the night, except for when they come in to give meds and take vitals. They have been great about lumping everything together to minimize waking him.
Tonight is my turn to stay with Johnny and Ginger’s to stay at the hotel. Neither one of us ever want to go back to the hotel, but we both realize that there is no reason for us to both exhaust ourselves. Splitting the duties just makes sense, although I always feel like the loser when it is my turn to go to the hotel.
We are hoping for another great day tomorrow. He has a nuclear medicine test at some point which will check the function of the pump (Important Test!). They are also planning on taking out the epidural and possibly his Foley catheter. He realllllly wants the Foley out! Tomorrow he will possibly start soft solids, if his belly cooperates. Then after that the big goals are a fart and a poop! If he can get that accomplished, then we could be home by Sunday. Not sure yet, but we should know more about when we are coming home by Friday.
Thanks again to everyone keeping my family fed and cared for at home (THANKS, AMY!!! J). And to my Class of ‘85 Facebook Friends -- you guys have made my time here actually enjoyable! It has been so fun to get the packages. Johnny got his package today and everything in it was so awesome. It came in a really cool blue and gold (school colors!!) gift box/wrapping. There was a great big yellow cup in the package that said, Healing is Progress and on the other side, Believe. I love that! Johnny is wearing the blue fuzzy socks right now. Thanks again, friends.
Hope everyone stayed warm with all the snow! Keep the prayers coming!
Johnny’s big adventure for the day was walking an entire lap around the unit. At first he started out by holding on to me and Laura, the nurse, but by half way around he felt steady enough to let go and fly on his own. Since he still has the epidural in, that was no small feat.
Once he got back to the room, he decided to sit up in the chair for an hour and while he did that I gave him a little bath and loaded him up with lotion. I tried to make it “enjoyable” -- if you know what I mean -- but for some reason Johnny really wasn’t that in to it. Something about that complete abdominal incision that was a total mood killer.
By the way, I counted his staples today. FIFTY-SIX! That’s right, he has 56 staples holding his belly shut and the cute thing is, they curved the incision around his belly button! The incision itself is about 12 inches long and he has another incision on the left where the pump was placed that is about 4 inches. Seriously, chicks dig guys with scars. I told him I’m going to parade him around the beach this summer and I’ll be like, “That’s right, I’m with the dude with the totally hot belly scars!”
He has made a hobby out of his inspirometer (the breathy thingy that keeps you from getting pneumonia) and is a champion at that. He showed off for the respiratory therapist today and she only stayed 30 seconds because she said he had it down pat.
The steady parade of doctors has been very entertaining. Dr. Yancy and his associates (a couple of 2nd-year surgical residents and a 4th-year med student) have stopped in twice a day. I really like Dr. Yancey. He reiterated how well the surgery went and said that the colon was fantastic. Then of course he said, “But you know that your liver is a mess.” And we do. Again he said that if the chemo will work on the big lesions, then the little ones (“innumerable”) will just go away as well. We aren’t supposed to concentrate on the number because if it will work for one it will work for them all. I like his way of thinking.
They stayed and chatted for several minutes tonight and Ginger offered them all chocolate. I think they missed lunch and possibly dinner because they wolfed it down. I’m thinking about making them all peanut butter and jelly sandwiches for tomorrow because they might be working too many hours to actually get any meals in. They really do put in a crazy amount of hours.
The anesthesiologist (NOT Dr. Hotty-With-a-Body) stopped in to check on the epidural and PCA pump. They upped his PCA to every 10 minutes instead of every 15 minutes yesterday, but today he hasn’t needed it nearly as often. I think the epidural was the greatest idea on the planet!
I have to give MAD PROPS to the nursing staff here. We have had the most amazing care. Stephanie, Colleen, Laura, and Kat have been his only nurses so far and I’d like to haul them all home and put them to work at SJRMC. Wow. Do you know that we have not waited on a call light, or any request for more than a minute . . . if that. Each one of these girls has been great and very caring and professional. The charge nurse has stopped in on each shift as well to make sure things are going OK. Also, an administrator (Director of Nursing) stopped in to say hi and to make sure we were being accommodated appropriately. In addition to all of those people, they have a person come in to evaluate you for sleep disorders as one of their Performance Improvement Initiatives. I was totally impressed by that. She told us that so many with sleep apnea go undiagnosed because medical professionals don’t ask the correct questions. Johnny was a “low risk” for sleep apnea. Good to know.
I guess you could say that I have been very impressed with quality of care we have received.
Johnny is sleeping pretty comfortably right now, and will basically be out for the night, except for when they come in to give meds and take vitals. They have been great about lumping everything together to minimize waking him.
Tonight is my turn to stay with Johnny and Ginger’s to stay at the hotel. Neither one of us ever want to go back to the hotel, but we both realize that there is no reason for us to both exhaust ourselves. Splitting the duties just makes sense, although I always feel like the loser when it is my turn to go to the hotel.
We are hoping for another great day tomorrow. He has a nuclear medicine test at some point which will check the function of the pump (Important Test!). They are also planning on taking out the epidural and possibly his Foley catheter. He realllllly wants the Foley out! Tomorrow he will possibly start soft solids, if his belly cooperates. Then after that the big goals are a fart and a poop! If he can get that accomplished, then we could be home by Sunday. Not sure yet, but we should know more about when we are coming home by Friday.
Thanks again to everyone keeping my family fed and cared for at home (THANKS, AMY!!! J). And to my Class of ‘85 Facebook Friends -- you guys have made my time here actually enjoyable! It has been so fun to get the packages. Johnny got his package today and everything in it was so awesome. It came in a really cool blue and gold (school colors!!) gift box/wrapping. There was a great big yellow cup in the package that said, Healing is Progress and on the other side, Believe. I love that! Johnny is wearing the blue fuzzy socks right now. Thanks again, friends.
Hope everyone stayed warm with all the snow! Keep the prayers coming!
Tuesday, February 9, 2010
The Whole Story
OK, I have had a nap, Johnny is settled in bed (probably for the night) and I finally feel like I have the time to fill you all in on the details of yesterday.
We arrived at the hospital at 5:30 and completed the registration process in less than 10 minutes. We were in pre-op by 5:45 and finished with all the preparations by 6:30, which included shaving what was left of the hair on his cute little belly.
The anesthesiologist came in to talk about the options available to Johnny. Let me just stop right here for a minute and say that: OMG! The anesthesiologist looked like he had just walked in from a photo shoot for the “Men of Anesthesia Calendar”. He looked to be about 25, and hotter than a 2-dollar pistol. Ladies between the ages of 19 and 25, his name is Ryan Miller. Holy Wah!
But I digress . . .
The options for anesthesia included an epidural for long-term pain management which sounded like a really great option. He said that for surgeries of this magnitude he likes to have the epidural in because it makes the first couple of days post-op so much more manageable. In addition to the epidural, he also has a Morphine PCA pump (the little button that he can push when he needs it).
Next, the senior surgical resident came in, Dr. Kyle Yancey. Nice guy. He is going to do well in medicine. One of the best bedside manners EVER! He asked Johnny what his understanding of the procedure was and then filled in any of the blanks that Johnny needed filled in. He was very thorough in his explanation without speaking down to us.
Dr. House then came in to complete the process and gave us the risks and benefits speech. We felt very confident again speaking with him and his confidence of the procedure and its outcome possibilities was comforting.
At 7:30 on the dot (No, I’m serious -- ON THE DOT!) the surgical tech came in and took Johnny back to surgery. I kissed him and managed not to cry (in front of him :o}) and then went to stake our claim on some real estate in the waiting room.
IU hospital has this really cool position . . . they have an RN whose job it is to round through each surgical suite and then come to the waiting room and report to each family. She does this every 60 - 90 minutes. It was wonderful, and made the time pass a bit more quickly, I think.
At 8:30 she came out and told us that they had made the initial incision and had started on the colon part of the surgery. At 10:00-ish, she reported that things were going smoothly, Johnny was stable and comfortable and they were working towards the gall bladder and lymph nodes. Sometime after 12 or 12:30 she reported that they had started work on the liver, removing some of the tumors for biopsy and evaluation. By 2:00 the report was that they had placed the Hepatic Artery Infusion (HAI) pump and would begin closing in 30 minutes or so. The 3:30 report was that they were closing and should be done shortly. At 4 they took us to the consultation room and Dr. House came in to give us the break down of the operation.
Here is the break down by part:
Colon: The removal of the section went great. He said that the tattooing made his job easy and the lesion easy to identify. He could feel a small nodule left in the mucosa of the bowel (approximately the size of an M&M) and it was probably the remnant of the primary tumor. Removed a few lymph nodes for study, but said that they looked “clean” and doesn’t expect to have any negative feedback from that. The end-to-end connection went together nicely and he doesn’t expect there to be any trouble from that. He will not be able to eat until Thursday at the earliest, but did drink quite a bit of water today. He enjoyed that a lot.
Gall bladder: Came out without a hitch. Nothing exciting to say about that.
Lymph nodes around the liver: Removed just to make sure nothing is traveling to other exciting destinations.
Liver: Ok, well here is where things take a little turn off “Every Thing is Perfect” Road. The tumors have continued to grow even since his CT scan here in January. There are about 10 tumors that range in size from 1 inch to golfball-size. In addition to these 10, there are “innumerable” lesions the size of peppercorns littered throughout the entire liver. According to Dr. House, this does not change our plan. In his words, “This is the right treatment at the right time.” He is still confident and still stands by his 60-70% response rate with this treatment. He would like to start chemo within 3 weeks of us getting home to start combating these obviously aggressive tumors. The news was overwhelming, but I have to say not altogether unexpected. I just had a feeling that these lesions were pissed off and were going to try to do a lot more damage in the little time they had left before we got to them.
The plan remains the same. The hope is that the infusion pump and the new chemo along with the systemic chemo will work its magic and knock out the lesions in the liver. Keeping in mind, they consider Johnny a “responder”. Since the chemo worked so well on the colon, we have every reason to believe that the correct chemo for the liver and through the pump will work equally as well. It just has to.
Ginger happened to ask Dr. House if he could even guess as to how long the cancer had been growing. He said that his best guess, with the obvious aggressiveness of the liver lesions and the size of the colon mass, was approximately one year before his initial diagnosis (July).
Johnny was in recovery for almost 4 hours, not because he was having trouble, but just like most hospitals, they were waiting on a room for him and then they had to wait on a nurse to arrive to take care of him. The girls in recovery were apologetic, but when I told them I knew the deal and that I understood, they let me spend another 5 minutes or so with Johnny. See, it pays to be nice!
Incidentally, his primary nurse in recovery, Liz, reminded me soooo much of my little friend, Jenny McKimmey! HI, SPUNK!! She was tiny and spunky and had glasses and moved and talked just like Jen. Silly as it may seem, it was comforting!
At about 8:30 or so last night they got him into his room (Room 5842) and once he was settled, I forced Ginger to go back to the hotel to get a good night’s sleep. I stayed with Johnny and took little naps through the night when he did. They provided us with a relatively comfortable pull out bed and I pulled it right up beside Johnny. I put the side rail of his bed down and we could hold hands all night long. He had trouble getting comfortable, and each time he wanted to change position required removing all of the sheets and blankets, monitoring the multitude of wires, tubes and catheters and finally getting settled. That usually lasted about 20 minutes and we would repeat the process all over again. Around 4 a.m. he slept for almost an hour and a half straight, and then the resident’s and other staff started in for the day.
He was able to sit up in a chair twice today, the first time was for 60 minutes and the second time was 90 minutes. Colleen, his nurse, was super impressed with him for even trying 90 minutes the second time.
So, here we are at 9 p.m. on Tuesday and he is gearing up for the second night. Tonight Ginger will send me back to the hotel to sleep and she will serve as night watchman for our Johnny. In the morning we will perform the changing of the guard and we will start the process all over again. It is nice to have Ginger here to share this with. There is no one else that would be able to do this with me (and for Johnny) on the entire earth!
Lots of you want to come visit, but I’m not sure when that will be feasible. Before planning your visit, please call. I would love to have you all stop by, but not at the expense of Johnny’s recovery. And I know each one of you understand.
Now for a couple shout outs:
To Mom and Dad: Thanks for being here for Johnny’s surgery. It was so comforting to have you here. I also want you to know that I appreciate all you do to make things easier on the boys. I love you so much.
To my sisters (and brothers-in-law): Thanks for making this easy on me by being my boys' other mothers. I know I can count on all of you to make this tough time easier on the boys. I couldn't do this without you, and I mean that from the very bottom of my heart. Love you Angie, Alan, Carla, Rob, and of course, Griffin!
To Aunt Barb: Thanks so much for the snacks, fruit, and beverages that you sent down with us. It so totally got us through the day yesterday and today as well. Lots of good stuff! Also, thanks for the meal for the boys and Carla, Robert and Griffin yesterday. They loved it, and Johnny and I appreciate it more than you could possibly know. Love from all of us!
Sonya: Love, love, love the puppy chow and everything else you sent down. The book has lots of lovely inspiration that I have found incredibly comforting. “Don’t fear tomorrow, God is already there.” I love you.
Linda (my other mother): Thanks for providing dinner for 1557 Harrah Road tonight. I know I can always count on you to be there for my family, for absolutely everything. I love you.
And to my FB Class of ‘85 Friends: You guys knocked my socks off! It was such a happy surprise to get a message from the front desk at the hotel saying I had a package. They brought it right up to me and the roses are absolutely gorgeous! I will be using the lovely bath products tonight when I go back to the hotel. Then, my kids call me screaming something about six pizzas from Chicago in dry ice. . . can we make bomb out of the dry ice, huh, Mom, huh?!?!?! They are so excited about the pizzas and are saving them for Friday night when they will watch the Winter Olympic Opening Ceremony. Sounds like they are planning a party and will be able to show off with their Authentic Chicago Pizza. I am just absolutely overwhelmed by you guys! Again I say, Facebook is AWESOME! Love to each one of you!
We arrived at the hospital at 5:30 and completed the registration process in less than 10 minutes. We were in pre-op by 5:45 and finished with all the preparations by 6:30, which included shaving what was left of the hair on his cute little belly.
The anesthesiologist came in to talk about the options available to Johnny. Let me just stop right here for a minute and say that: OMG! The anesthesiologist looked like he had just walked in from a photo shoot for the “Men of Anesthesia Calendar”. He looked to be about 25, and hotter than a 2-dollar pistol. Ladies between the ages of 19 and 25, his name is Ryan Miller. Holy Wah!
But I digress . . .
The options for anesthesia included an epidural for long-term pain management which sounded like a really great option. He said that for surgeries of this magnitude he likes to have the epidural in because it makes the first couple of days post-op so much more manageable. In addition to the epidural, he also has a Morphine PCA pump (the little button that he can push when he needs it).
Next, the senior surgical resident came in, Dr. Kyle Yancey. Nice guy. He is going to do well in medicine. One of the best bedside manners EVER! He asked Johnny what his understanding of the procedure was and then filled in any of the blanks that Johnny needed filled in. He was very thorough in his explanation without speaking down to us.
Dr. House then came in to complete the process and gave us the risks and benefits speech. We felt very confident again speaking with him and his confidence of the procedure and its outcome possibilities was comforting.
At 7:30 on the dot (No, I’m serious -- ON THE DOT!) the surgical tech came in and took Johnny back to surgery. I kissed him and managed not to cry (in front of him :o}) and then went to stake our claim on some real estate in the waiting room.
IU hospital has this really cool position . . . they have an RN whose job it is to round through each surgical suite and then come to the waiting room and report to each family. She does this every 60 - 90 minutes. It was wonderful, and made the time pass a bit more quickly, I think.
At 8:30 she came out and told us that they had made the initial incision and had started on the colon part of the surgery. At 10:00-ish, she reported that things were going smoothly, Johnny was stable and comfortable and they were working towards the gall bladder and lymph nodes. Sometime after 12 or 12:30 she reported that they had started work on the liver, removing some of the tumors for biopsy and evaluation. By 2:00 the report was that they had placed the Hepatic Artery Infusion (HAI) pump and would begin closing in 30 minutes or so. The 3:30 report was that they were closing and should be done shortly. At 4 they took us to the consultation room and Dr. House came in to give us the break down of the operation.
Here is the break down by part:
Colon: The removal of the section went great. He said that the tattooing made his job easy and the lesion easy to identify. He could feel a small nodule left in the mucosa of the bowel (approximately the size of an M&M) and it was probably the remnant of the primary tumor. Removed a few lymph nodes for study, but said that they looked “clean” and doesn’t expect to have any negative feedback from that. The end-to-end connection went together nicely and he doesn’t expect there to be any trouble from that. He will not be able to eat until Thursday at the earliest, but did drink quite a bit of water today. He enjoyed that a lot.
Gall bladder: Came out without a hitch. Nothing exciting to say about that.
Lymph nodes around the liver: Removed just to make sure nothing is traveling to other exciting destinations.
Liver: Ok, well here is where things take a little turn off “Every Thing is Perfect” Road. The tumors have continued to grow even since his CT scan here in January. There are about 10 tumors that range in size from 1 inch to golfball-size. In addition to these 10, there are “innumerable” lesions the size of peppercorns littered throughout the entire liver. According to Dr. House, this does not change our plan. In his words, “This is the right treatment at the right time.” He is still confident and still stands by his 60-70% response rate with this treatment. He would like to start chemo within 3 weeks of us getting home to start combating these obviously aggressive tumors. The news was overwhelming, but I have to say not altogether unexpected. I just had a feeling that these lesions were pissed off and were going to try to do a lot more damage in the little time they had left before we got to them.
The plan remains the same. The hope is that the infusion pump and the new chemo along with the systemic chemo will work its magic and knock out the lesions in the liver. Keeping in mind, they consider Johnny a “responder”. Since the chemo worked so well on the colon, we have every reason to believe that the correct chemo for the liver and through the pump will work equally as well. It just has to.
Ginger happened to ask Dr. House if he could even guess as to how long the cancer had been growing. He said that his best guess, with the obvious aggressiveness of the liver lesions and the size of the colon mass, was approximately one year before his initial diagnosis (July).
Johnny was in recovery for almost 4 hours, not because he was having trouble, but just like most hospitals, they were waiting on a room for him and then they had to wait on a nurse to arrive to take care of him. The girls in recovery were apologetic, but when I told them I knew the deal and that I understood, they let me spend another 5 minutes or so with Johnny. See, it pays to be nice!
Incidentally, his primary nurse in recovery, Liz, reminded me soooo much of my little friend, Jenny McKimmey! HI, SPUNK!! She was tiny and spunky and had glasses and moved and talked just like Jen. Silly as it may seem, it was comforting!
At about 8:30 or so last night they got him into his room (Room 5842) and once he was settled, I forced Ginger to go back to the hotel to get a good night’s sleep. I stayed with Johnny and took little naps through the night when he did. They provided us with a relatively comfortable pull out bed and I pulled it right up beside Johnny. I put the side rail of his bed down and we could hold hands all night long. He had trouble getting comfortable, and each time he wanted to change position required removing all of the sheets and blankets, monitoring the multitude of wires, tubes and catheters and finally getting settled. That usually lasted about 20 minutes and we would repeat the process all over again. Around 4 a.m. he slept for almost an hour and a half straight, and then the resident’s and other staff started in for the day.
He was able to sit up in a chair twice today, the first time was for 60 minutes and the second time was 90 minutes. Colleen, his nurse, was super impressed with him for even trying 90 minutes the second time.
So, here we are at 9 p.m. on Tuesday and he is gearing up for the second night. Tonight Ginger will send me back to the hotel to sleep and she will serve as night watchman for our Johnny. In the morning we will perform the changing of the guard and we will start the process all over again. It is nice to have Ginger here to share this with. There is no one else that would be able to do this with me (and for Johnny) on the entire earth!
Lots of you want to come visit, but I’m not sure when that will be feasible. Before planning your visit, please call. I would love to have you all stop by, but not at the expense of Johnny’s recovery. And I know each one of you understand.
Now for a couple shout outs:
To Mom and Dad: Thanks for being here for Johnny’s surgery. It was so comforting to have you here. I also want you to know that I appreciate all you do to make things easier on the boys. I love you so much.
To my sisters (and brothers-in-law): Thanks for making this easy on me by being my boys' other mothers. I know I can count on all of you to make this tough time easier on the boys. I couldn't do this without you, and I mean that from the very bottom of my heart. Love you Angie, Alan, Carla, Rob, and of course, Griffin!
To Aunt Barb: Thanks so much for the snacks, fruit, and beverages that you sent down with us. It so totally got us through the day yesterday and today as well. Lots of good stuff! Also, thanks for the meal for the boys and Carla, Robert and Griffin yesterday. They loved it, and Johnny and I appreciate it more than you could possibly know. Love from all of us!
Sonya: Love, love, love the puppy chow and everything else you sent down. The book has lots of lovely inspiration that I have found incredibly comforting. “Don’t fear tomorrow, God is already there.” I love you.
Linda (my other mother): Thanks for providing dinner for 1557 Harrah Road tonight. I know I can always count on you to be there for my family, for absolutely everything. I love you.
And to my FB Class of ‘85 Friends: You guys knocked my socks off! It was such a happy surprise to get a message from the front desk at the hotel saying I had a package. They brought it right up to me and the roses are absolutely gorgeous! I will be using the lovely bath products tonight when I go back to the hotel. Then, my kids call me screaming something about six pizzas from Chicago in dry ice. . . can we make bomb out of the dry ice, huh, Mom, huh?!?!?! They are so excited about the pizzas and are saving them for Friday night when they will watch the Winter Olympic Opening Ceremony. Sounds like they are planning a party and will be able to show off with their Authentic Chicago Pizza. I am just absolutely overwhelmed by you guys! Again I say, Facebook is AWESOME! Love to each one of you!
Monday, February 8, 2010
No Whammies
The battery is about to run out on my laptop, so here is the nutshell version (I will give all the details after I retrieve my power cord from the hotel).
According to Dr. House:
He found NO SURPRISES. Which in our world is always a good thing.
The colon surgery went very smoothly.
The gall bladder removal went off without a hitch.
The Hepatic Artery Infusion (HAI) pump placement also went smoothly, and they tested to see if it was infusing properly -- and it was.
The liver has some tumors that are quite stubborn, but we will talk about them when I get the power cord.
My computer just told me it is going to shut off in 2 minutes due to lack of power, so I will post this now and get back to you all later.
Thanks for the prayers, we know there were tons of them today.
According to Dr. House:
He found NO SURPRISES. Which in our world is always a good thing.
The colon surgery went very smoothly.
The gall bladder removal went off without a hitch.
The Hepatic Artery Infusion (HAI) pump placement also went smoothly, and they tested to see if it was infusing properly -- and it was.
The liver has some tumors that are quite stubborn, but we will talk about them when I get the power cord.
My computer just told me it is going to shut off in 2 minutes due to lack of power, so I will post this now and get back to you all later.
Thanks for the prayers, we know there were tons of them today.
Sunday, February 7, 2010
12 hours and counting . . .
The alarm is set for 4:30, and we will be in registration by 5:30 tomorrow morning. I think we are ready. Well . . . ready for it to be over with!
We are in the hotel (University Place Hotel) directly across from the hospital. There is a walkway from the hotel directly in to the hospital which is open 24 hours. We like that. When we got here I told the gentleman at the front desk that we were here for "medical purposes" and would really appreciate being in a quiet room. We are on the 8th floor, and I don't think there is anyone else on this floor at all. Totally quiet!
The rooms and very spacious and have plenty of niceties. I feel bad that we are watching the Super Bowl and Johnny can't eat anything. Takes the fun out of the festivities altogether! We have a truckload of snacks in the room, too, which is kinda cruel. We were well supplied with snacks for our stay to be sure. Sonya, Barb, and Angie -- thanks for all the goodies! We will enjoy them when Johnny isn't here!
Mom and Dad, Ginger, and me and Johnny are all watching the game (OK, well, I am listening and perk up when the commercials come on) and will probably not get a whole lot of sleep tonight. We'll have the rest of the week to catch up.
I will update tomorrow as soon as we hear something after surgery. I do have a small request, if you will indulge me yet again. Will you please set your alarm (clock, cell phone, iPhone, pager, whatever) for 7:30 tomorrow morning. I would love it if we could all pray together and just inundate God with our prayers. I think he already knows how special Johnny is to all of us, but lets just give him a little reminder. I will be praying, and I hope you will join me, Ginger, and my mom and dad.
So, until tomorrow after surgery the only thing I can ask for is prayer and more prayer! That's all we need at this point.
We expect the surgery to take up to 4 hours, so I hope to post by noon or 1 o'clock. Believe me, I will do it as soon as I possibly can.
Love to everyone.
We are in the hotel (University Place Hotel) directly across from the hospital. There is a walkway from the hotel directly in to the hospital which is open 24 hours. We like that. When we got here I told the gentleman at the front desk that we were here for "medical purposes" and would really appreciate being in a quiet room. We are on the 8th floor, and I don't think there is anyone else on this floor at all. Totally quiet!
The rooms and very spacious and have plenty of niceties. I feel bad that we are watching the Super Bowl and Johnny can't eat anything. Takes the fun out of the festivities altogether! We have a truckload of snacks in the room, too, which is kinda cruel. We were well supplied with snacks for our stay to be sure. Sonya, Barb, and Angie -- thanks for all the goodies! We will enjoy them when Johnny isn't here!
Mom and Dad, Ginger, and me and Johnny are all watching the game (OK, well, I am listening and perk up when the commercials come on) and will probably not get a whole lot of sleep tonight. We'll have the rest of the week to catch up.
I will update tomorrow as soon as we hear something after surgery. I do have a small request, if you will indulge me yet again. Will you please set your alarm (clock, cell phone, iPhone, pager, whatever) for 7:30 tomorrow morning. I would love it if we could all pray together and just inundate God with our prayers. I think he already knows how special Johnny is to all of us, but lets just give him a little reminder. I will be praying, and I hope you will join me, Ginger, and my mom and dad.
So, until tomorrow after surgery the only thing I can ask for is prayer and more prayer! That's all we need at this point.
We expect the surgery to take up to 4 hours, so I hope to post by noon or 1 o'clock. Believe me, I will do it as soon as I possibly can.
Love to everyone.
Monday, February 1, 2010
One Week and Counting!
One week from today I will be writing to you from Johnny's luxurious accomodations at the Indiana University Hospital in Indianapolis.
By this time next week, Johnny should be settled in his room post-op and Ginger and I will be fighting over who gets to fluff his pillow next. It is my greatest prayer that I will be reporting all good stuff from the surgery, and I'll be praying like the dickens all week that it goes perfectly. I wouldn't mind if you all joined me in that prayer, as well.
Many of you have left messages asking what you can do to help. Well, first and foremost, please pray. That, if nothing else, if priceless. Secondly, if you look to the right column of the blog, you will notice that Lori Brawley has again offered to be our meal coordinator. This was an ENORMOUS help during the first weeks of Johnny's diagnosis and we figured that eventually we might need your help with this again. My biggest thing is to make the week we are gone as easy as possible on the kids and my sisters (who will be taking over primary Mom/Dad duties). Carla and Rob (and Griffin!) will be staying here so that the boys can sleep in their own beds and have their schedules remain as normal as possible. Meals for them is a main concern for me. Thanks to those of you who have already contacted Lori. It really means a lot to all of us!
Johnny is still dealing with some remnant side effects from the first chemo protocol. His hands are still numb (for which he takes Neurontin) and his blood pressure is still high-ish (140s over 90s). We are still working on getting rid of these side effects before he starts the next protocol. Looks like the main effect of the next round is diarrhea (I know, yuck) and stomach ulcers. We will start attacking the new side effects straight out of the gates with the next round.
So, I guess we just bide our time until next Monday. Our list of questions will have answers and our minds will (hopefully) be at ease for a little while. Broken record coming . . . please pray.
By this time next week, Johnny should be settled in his room post-op and Ginger and I will be fighting over who gets to fluff his pillow next. It is my greatest prayer that I will be reporting all good stuff from the surgery, and I'll be praying like the dickens all week that it goes perfectly. I wouldn't mind if you all joined me in that prayer, as well.
Many of you have left messages asking what you can do to help. Well, first and foremost, please pray. That, if nothing else, if priceless. Secondly, if you look to the right column of the blog, you will notice that Lori Brawley has again offered to be our meal coordinator. This was an ENORMOUS help during the first weeks of Johnny's diagnosis and we figured that eventually we might need your help with this again. My biggest thing is to make the week we are gone as easy as possible on the kids and my sisters (who will be taking over primary Mom/Dad duties). Carla and Rob (and Griffin!) will be staying here so that the boys can sleep in their own beds and have their schedules remain as normal as possible. Meals for them is a main concern for me. Thanks to those of you who have already contacted Lori. It really means a lot to all of us!
Johnny is still dealing with some remnant side effects from the first chemo protocol. His hands are still numb (for which he takes Neurontin) and his blood pressure is still high-ish (140s over 90s). We are still working on getting rid of these side effects before he starts the next protocol. Looks like the main effect of the next round is diarrhea (I know, yuck) and stomach ulcers. We will start attacking the new side effects straight out of the gates with the next round.
So, I guess we just bide our time until next Monday. Our list of questions will have answers and our minds will (hopefully) be at ease for a little while. Broken record coming . . . please pray.
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