17 nodes - NO sign of cancer.
Thank you.
Friday, November 20, 2009
Post surgery...
Wanted to post a bit about the progress Terry has made.
We got to his room about 9 Tuesday night.
He had a naso-graphic tube to drain around his incision, two chest tubes, a Foley catheter, an epidural, an iv for fluids and meds, a patient-controlled morphine drip (could be activated every 6 minunal ts), vibrating stockings on his legs, a jejumal tube that drained the upper part of his small intestine, and your standard blood pressure cuff, temperature control, etc.
The first day, they took out one drain. Second day, they couldn't take out the second drain, as he was still putting out too much fluid.
Third day - naso-gastric tube came out at 7AM - great. Epidural is out. Patient-controlled morphine drip is gone. The Foley cath will come out 6 hours after the epidural is out.
The jejunal tube is now a feeding tube, and he is starting some high-nutrition liquid tube feed directly into his abdomen.
The third day is a good day.
We got to his room about 9 Tuesday night.
He had a naso-graphic tube to drain around his incision, two chest tubes, a Foley catheter, an epidural, an iv for fluids and meds, a patient-controlled morphine drip (could be activated every 6 minunal ts), vibrating stockings on his legs, a jejumal tube that drained the upper part of his small intestine, and your standard blood pressure cuff, temperature control, etc.
The first day, they took out one drain. Second day, they couldn't take out the second drain, as he was still putting out too much fluid.
Third day - naso-gastric tube came out at 7AM - great. Epidural is out. Patient-controlled morphine drip is gone. The Foley cath will come out 6 hours after the epidural is out.
The jejunal tube is now a feeding tube, and he is starting some high-nutrition liquid tube feed directly into his abdomen.
The third day is a good day.
Surgery!
Terry tolerated the surgery very well. He went in at 9 AM, and went to his room about 12 hrs later. The U is a teaching hospital, and there were far too many "baby docs" running around, trying to be important. Repeating the same questions over and over again. We won't even go into the nurses in training, the respiratory therapists in training, and the dieticians in training. No PAs in training though, so far, just lots of PAs all named Susan. At least, I know where to apply for my next job.
He had a transesophageal esopghagectomy - basically, they removed his esophagus with a cut at the neck, and another at the top of the stomach, and then pulled the stomach up to his neck. It's a lot like bariatric surgery. We watched a DVD with Dr Orringer, who pioneered this type of surgery. He explained that the advantage of the transhiatal approach is that they don't crack the chest, so all those bones are okay, and the top of the stomach is attached at the base of the neck, and if something goes wrong (leakage is the most common problem), they don't have to go into the chest again to fix any problems. The death and complications rates are much lower. The main competition for this approach comes from the U of Pittsburgh, which does this laparascopically, and is represented in this area by the surgeon we talked to at St Joes.
One of the truly wonderous things about being a recovering alcoholic is that I had friends who stayed with me throughout the whole surgery, and held my hand when it was time to see the surgeon. The doc says that what was a tumor was just an irradiated lump of goo, but that we won't know the final pathology for 3 to 5 business days.He has an epidural, and a morphine pump, that seems to knock him out, but doesn't do anything to make the pain go away. Today, he sat up in a chair, and walked down the hall. They have started pulling tubes. One today, hopefully, another tomorrow. He has some breakthrough pain, and I pointed out that maybe they're willing to tolerate 4 on the pain scale, but I'm not sure that I am, since the morphine seems pretty useless, so they juiced up his meds, adding tylenol as a pain killer. It made a real difference.
Called three first cousins on his side, and my brother to get the family news chains started last night,
The hospital has a big soft chair they allow spouses to sleep in. They must have gotten a deal - I got sciatica from the damned thing, so after the first night I slept on a pad of blankets on the floor. The big disadvantage - aside from how cold and hard it is - is that people didn't know where I was, and sometimes stepped on me. So, last night, I finally found a good alternative - got a low chair to put my feet in, and that this was the closest to comfotable I came.
He had a transesophageal esopghagectomy - basically, they removed his esophagus with a cut at the neck, and another at the top of the stomach, and then pulled the stomach up to his neck. It's a lot like bariatric surgery. We watched a DVD with Dr Orringer, who pioneered this type of surgery. He explained that the advantage of the transhiatal approach is that they don't crack the chest, so all those bones are okay, and the top of the stomach is attached at the base of the neck, and if something goes wrong (leakage is the most common problem), they don't have to go into the chest again to fix any problems. The death and complications rates are much lower. The main competition for this approach comes from the U of Pittsburgh, which does this laparascopically, and is represented in this area by the surgeon we talked to at St Joes.
One of the truly wonderous things about being a recovering alcoholic is that I had friends who stayed with me throughout the whole surgery, and held my hand when it was time to see the surgeon. The doc says that what was a tumor was just an irradiated lump of goo, but that we won't know the final pathology for 3 to 5 business days.He has an epidural, and a morphine pump, that seems to knock him out, but doesn't do anything to make the pain go away. Today, he sat up in a chair, and walked down the hall. They have started pulling tubes. One today, hopefully, another tomorrow. He has some breakthrough pain, and I pointed out that maybe they're willing to tolerate 4 on the pain scale, but I'm not sure that I am, since the morphine seems pretty useless, so they juiced up his meds, adding tylenol as a pain killer. It made a real difference.
Called three first cousins on his side, and my brother to get the family news chains started last night,
The hospital has a big soft chair they allow spouses to sleep in. They must have gotten a deal - I got sciatica from the damned thing, so after the first night I slept on a pad of blankets on the floor. The big disadvantage - aside from how cold and hard it is - is that people didn't know where I was, and sometimes stepped on me. So, last night, I finally found a good alternative - got a low chair to put my feet in, and that this was the closest to comfotable I came.
Sunday, November 8, 2009
Saturday, November 7, 2009
PreOp Meeting with Surgeon
So, Friday was one FULL day.
I called in sick to work - well, I didn't feel good, but I probably could have made it in, if I didn't have something better to do.
Terry had a 9:30 appointment with surgeon. We had a conversation with the lady in charge of the patient progression database (I asked lots of questions about the quality of their security - she was quite surprised - I guess nobody everybody ever asks? How bizarre.) Then we talked to the surgical resident.
She indicates that she will be totally in charge of Terry's care - that she will do most of the surgery, and will be responsible for T's care. I was like, wait a minute. We came here for this big-shot surgeon. Well, he'll check in when he's aroud. Oh, good. Senior surgeon came in, inidicated he didn't get what my problem was, his assistant is as good as most general thoracic surgeons out there, he believes. How do you get someone to see that if we were interested in mediocre, we wouldn't be at a big name institution?
We talked with the nurse about pre-op preparations. She kept saying that I would probably be able to stay with Terry after surgery. I kept saying that I wasn't going to leave him; she'd say well, probably, and I say no - I AM NOT LEAVING HIM. She said, she'll put it in the notes. I asked who did I talk to - I am not leaving him. She said well - I said no. Dropped it. Went over cutting down diet, and getting digestive system clean.
I don't trust floor nurses. Have had some bad experiences, and fear that they will not be present for him. Understaffing is a problem. I probably wouldn't have gotten so tense, if they hadn't kept talking about how good their nurses are - in my opinion, they're protesting too much. The chemo nurses were wonderful, though, but the dr's nurse practitioners were mixed (Leah sucked, Heidi was ok, if limited, and was willing to give us less-than optimal (her own admission)). So, my job is to insist on optimal.
I have to not be too shrewish until the situation calls for it - that'll be hard, because I want to scream at them - HE'S IMPORTANT TO ME. YOU GIVE HIM YOUR ABSOLUTE BEST EVERY SECOND, OR I WILL SLAP YOU. I suspect that this is not the best way to get what I need.
So, getting out of the future - I could be wrong, it would be really good to not have my expectations met.
Went on to get pre-op chest x-ray, EKG, blood work. T drove me through a Burger King drive-through, and I had a chicken sandwich. I felt guilty because he couldn't eat, and I was STARVING.
Then a pre-op barium swallow. I sat in the waiting room, and got chatting with some other spouses (these were, oddly enough, male). It was the day after the soldier shot all those other soldiers at Ft Hood, and the guy in Orlando was shooting people at his old job. We all kind of agreed that America isn't a very nice country today, and we put too much stress on each other. That corporations are soulless and amoral, and not a source of good for hardly anyone.
I didn't sleep last night, except for maybe 2 hrs - So scared.
So today, we all went to meetings. I fell asleep in the car for a few minutes on the way home. I feel better. I can do this.
I thought this blog would be both of us - instead, it's turning out to be psycho spouse's view.
Oh well.
I called in sick to work - well, I didn't feel good, but I probably could have made it in, if I didn't have something better to do.
Terry had a 9:30 appointment with surgeon. We had a conversation with the lady in charge of the patient progression database (I asked lots of questions about the quality of their security - she was quite surprised - I guess nobody everybody ever asks? How bizarre.) Then we talked to the surgical resident.
She indicates that she will be totally in charge of Terry's care - that she will do most of the surgery, and will be responsible for T's care. I was like, wait a minute. We came here for this big-shot surgeon. Well, he'll check in when he's aroud. Oh, good. Senior surgeon came in, inidicated he didn't get what my problem was, his assistant is as good as most general thoracic surgeons out there, he believes. How do you get someone to see that if we were interested in mediocre, we wouldn't be at a big name institution?
We talked with the nurse about pre-op preparations. She kept saying that I would probably be able to stay with Terry after surgery. I kept saying that I wasn't going to leave him; she'd say well, probably, and I say no - I AM NOT LEAVING HIM. She said, she'll put it in the notes. I asked who did I talk to - I am not leaving him. She said well - I said no. Dropped it. Went over cutting down diet, and getting digestive system clean.
I don't trust floor nurses. Have had some bad experiences, and fear that they will not be present for him. Understaffing is a problem. I probably wouldn't have gotten so tense, if they hadn't kept talking about how good their nurses are - in my opinion, they're protesting too much. The chemo nurses were wonderful, though, but the dr's nurse practitioners were mixed (Leah sucked, Heidi was ok, if limited, and was willing to give us less-than optimal (her own admission)). So, my job is to insist on optimal.
I have to not be too shrewish until the situation calls for it - that'll be hard, because I want to scream at them - HE'S IMPORTANT TO ME. YOU GIVE HIM YOUR ABSOLUTE BEST EVERY SECOND, OR I WILL SLAP YOU. I suspect that this is not the best way to get what I need.
So, getting out of the future - I could be wrong, it would be really good to not have my expectations met.
Went on to get pre-op chest x-ray, EKG, blood work. T drove me through a Burger King drive-through, and I had a chicken sandwich. I felt guilty because he couldn't eat, and I was STARVING.
Then a pre-op barium swallow. I sat in the waiting room, and got chatting with some other spouses (these were, oddly enough, male). It was the day after the soldier shot all those other soldiers at Ft Hood, and the guy in Orlando was shooting people at his old job. We all kind of agreed that America isn't a very nice country today, and we put too much stress on each other. That corporations are soulless and amoral, and not a source of good for hardly anyone.
I didn't sleep last night, except for maybe 2 hrs - So scared.
So today, we all went to meetings. I fell asleep in the car for a few minutes on the way home. I feel better. I can do this.
I thought this blog would be both of us - instead, it's turning out to be psycho spouse's view.
Oh well.
Tuesday, November 3, 2009
My nightmares
Woke up in the middle of the night feeling the overlooked, scared, in danger stuff. Wow, bad dreams! What the heck?
About midafternoon, I'm working using the calendar, and I realize, that it has been two years since I found THE LUMP. The next two months is an anniversary of waiting for mammo, waiting for results, and interactions with very odd doctors. Terry will likely be in the hospital on Thanksgiving - I remember looking at the carving knife, thinking I could just cut that diseased boob OFF, and maybe then somebody would have some time to pay attention to what I knew was cancer.
I got out of the tub, and looked up at the bathroom mirror, boob moved, and I realized it was moving wrong. I put my hand where the wrongness was, and there was a lump. Next day, I called my doctor - saw her 3 days later. Nothing, she says. If I want to, why don't I have a mammogram. The Nurse Assistant tells me that there is wonderful new breast center down at Fairlane. I call, and ask for an appointment.
Nothing for 8 weeks - the end of December - that's the best you can do? I hear my voice crack when I say, but I have a LUMP. We have no appointments until then. I ask friends, and get the names of other centers around - no appointments.
Guess what, it's just after Breast Cancer Awareness Month - every mammo place is squishing boobs madly. No openings.
Okay, I can do this. Day after day. The lump is still there, even a little bigger. Day after day. Thanksgiving I almost lost my mind.
Christmas, I could say, well, only a few more days.
I always knew it was cancer, from the moment I found it.
About midafternoon, I'm working using the calendar, and I realize, that it has been two years since I found THE LUMP. The next two months is an anniversary of waiting for mammo, waiting for results, and interactions with very odd doctors. Terry will likely be in the hospital on Thanksgiving - I remember looking at the carving knife, thinking I could just cut that diseased boob OFF, and maybe then somebody would have some time to pay attention to what I knew was cancer.
I got out of the tub, and looked up at the bathroom mirror, boob moved, and I realized it was moving wrong. I put my hand where the wrongness was, and there was a lump. Next day, I called my doctor - saw her 3 days later. Nothing, she says. If I want to, why don't I have a mammogram. The Nurse Assistant tells me that there is wonderful new breast center down at Fairlane. I call, and ask for an appointment.
Nothing for 8 weeks - the end of December - that's the best you can do? I hear my voice crack when I say, but I have a LUMP. We have no appointments until then. I ask friends, and get the names of other centers around - no appointments.
Guess what, it's just after Breast Cancer Awareness Month - every mammo place is squishing boobs madly. No openings.
Okay, I can do this. Day after day. The lump is still there, even a little bigger. Day after day. Thanksgiving I almost lost my mind.
Christmas, I could say, well, only a few more days.
I always knew it was cancer, from the moment I found it.
Saturday, October 31, 2009
How we're doing
You know, despite all my whining and terrors, I really believe that Terry is going to be okay. Maybe because I refuse to entertain the idea that he will not be my partner forever. I stay awake until I drop, but I sleep.
Worked 8 hrs today - when I got home, Terry and Krista were in Ann Arbor, visiting a friend of hers who had bariatric surgery. So I curled up and took a nap. When I woke up, they were staring down at me, saying boy, you look awful. You look exhausted. Please, go back to sleep.
Hmmm, maybe I need some more rest.
Terry is having bouts of insomnia. But he is napping a lot. The chemo/rads really took it out of him. But his face is looking better - rested and ready. And, despite the fact that Cisplatin and 5FU have hair loss as an SE, he really needs a hair cut, and he just lost a little around the hair line (Wouldn't you know!).
Today, we are having a good day.
Worked 8 hrs today - when I got home, Terry and Krista were in Ann Arbor, visiting a friend of hers who had bariatric surgery. So I curled up and took a nap. When I woke up, they were staring down at me, saying boy, you look awful. You look exhausted. Please, go back to sleep.
Hmmm, maybe I need some more rest.
Terry is having bouts of insomnia. But he is napping a lot. The chemo/rads really took it out of him. But his face is looking better - rested and ready. And, despite the fact that Cisplatin and 5FU have hair loss as an SE, he really needs a hair cut, and he just lost a little around the hair line (Wouldn't you know!).
Today, we are having a good day.
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