We took a little trip today to the Ostomy Shoppe. No kidding, the place only sells Ostomy supplies. It's sobering to think that for the rest of your life you're going to need these appendages. So I guess it's good to know that there's a place dedicated to providing them. The shop is run by Bill Adkins, an early 60s, robust looking man who told us he'd had his ostomy when he was 24 years old - the result of ulcertive colitis.
He was a font of information about managing your colostomy needs and provided a lot of good information. There are, it seems, many different kinds of ostomy bags - larger ones, smaller ones, some with filters, some that can be emptied, some that can't, and small caps for those "intimate moments". He also told us of the local Ostomy Support Group. I don't know whether Steve will go to any meetings or not, but i think it might be a good thing for him to spend time with others who have gone through the same thing and learned how to cope with the challenges it presents. Surprisingly, when Bill brought it up Steve didn't seem dead set against it. That's positive in and of itself.
So we shopped, got a selection of stuff to try and see what he likes best. It's not quite Saks, but it didn't cost us anything either (thank God for Blue Cross Blue Shield!) and it was good for Steve to get out of the house.
He's been markedly improved the last few days - sitting up much of the time, reading a little, doing some puzzles (things to interact with rather than just lie on the sofa and let Sports Center wash over him). Visits have also been a huge help. Gerry and Kevin came over on Tuesday and hung out for a few hours - they played cards and whatever else guys do. I came home and Steve was sitting up, animated and seemed very much like his old self.
The guys are coming over tomorrow and Steve's really looking forward to it.
A physical therapist is also coming tomorrow to do an evaluation. Steve and I walk each night - a little further each day - but it's slow going and he's trying not to push too much for fear of overdoing. He's having some pain in his legs and could use some exercises he can do without over exerting himself to get his muscle tone back and reduce the pain he's having.
All in all, he's doing better and, as he said tonight, he can see the day when he'll be better.
Wednesday, September 26, 2007
Sunday, September 23, 2007
The ups and downs
Today was a good day.
As our friend Brian says as his wife - and a close friend of ours for years - recovers from a major medical crisis, you take the good days as a step toward recovery and the bad days as the price you pay for a good one.
Yesterday, Steve was depressed - badly. I was almost going to say despondent but thought that might be too strong a word. But it's only a shade too strong. He felt useless, tired, cut up, damaged, weak and helpless. He was angry. Steve's a sensitive person and he always says if he gets really angry one of two things will happen: he'll either cry or fight. Yesterday he cried.
That breaks my heart because there is nothing I can do or say to make it any better. Yes, medically we know that we are on the upswing and he's going to be fine. But it is a hard road and he is not used to being this weak and dependent. So I pretty much did the only think I could think of - and I think it was the right thing - I left him alone.
Today, our friends Kevin and Coreen came over bearing lunch and a basket of games and snacks. They stayed for a few hours: Coreen taught me how to play Cribbage and Steve and Kevin watched football. It was terrific. Steve had a good appetite and ate fried chicken, mashed potatoes, biscuits and gravy! And he sat up all the time Kevin was here, watching the game, talking, engaged and looking good.
This seemed to reinforce what I've been thinking since he got home: You feel worse when you just lay on the sofa. Interaction with people or with something - read a book, send emails, do a puzzle - makes you feel more like you are DOING SOMETHING. And that makes all the difference. He's tired now and is stretched out on the sofa watching the late game and probably going to nap a bit. But he's earned that.
Visitors make a difference, so if you're local and you're around, stop by.
As our friend Brian says as his wife - and a close friend of ours for years - recovers from a major medical crisis, you take the good days as a step toward recovery and the bad days as the price you pay for a good one.
Yesterday, Steve was depressed - badly. I was almost going to say despondent but thought that might be too strong a word. But it's only a shade too strong. He felt useless, tired, cut up, damaged, weak and helpless. He was angry. Steve's a sensitive person and he always says if he gets really angry one of two things will happen: he'll either cry or fight. Yesterday he cried.
That breaks my heart because there is nothing I can do or say to make it any better. Yes, medically we know that we are on the upswing and he's going to be fine. But it is a hard road and he is not used to being this weak and dependent. So I pretty much did the only think I could think of - and I think it was the right thing - I left him alone.
Today, our friends Kevin and Coreen came over bearing lunch and a basket of games and snacks. They stayed for a few hours: Coreen taught me how to play Cribbage and Steve and Kevin watched football. It was terrific. Steve had a good appetite and ate fried chicken, mashed potatoes, biscuits and gravy! And he sat up all the time Kevin was here, watching the game, talking, engaged and looking good.
This seemed to reinforce what I've been thinking since he got home: You feel worse when you just lay on the sofa. Interaction with people or with something - read a book, send emails, do a puzzle - makes you feel more like you are DOING SOMETHING. And that makes all the difference. He's tired now and is stretched out on the sofa watching the late game and probably going to nap a bit. But he's earned that.
Visitors make a difference, so if you're local and you're around, stop by.
Thursday, September 20, 2007
2-week anniversary
Just a note: Today is two weeks from Steve's surgery. Actually, when I think about it in those terms, he's doing remarkably well!
Tuesday, September 18, 2007
Back to work
The biggest challenge Steve faces now is that recovery is a slow process. He's doing well for the most part. He's eating, drinking lots of water and Gatorade (the last couple of times it's been checked his blood pressure was low -- 90 over 60. The doctors say this is just a volume issue and to drink more and more to pump it up.). We've been taking some walks - SHORTER ones - each night.
A big issue for him has been that his backside is giving him a lot of pain so he's been unable to sit. That's forced him to lay down all the time - and we all know how lousy you can feel if you just lay down all the time. It turns out, according to our visiting nurse, that he is "pocketing" blood and discharge from the incision in his butt. We got a quick appointment with the doctor covering for our surgeon, who was out of town, yesterday. He pronounced this to be "something to watch." Apparently, there's a high rate of infection with this. But he didn't do anything proactive like aspirate it, which I thought/hoped he might.
However, if you press on the area, you get some of this pocketed blood and liquid out and that relieves the pressure. Last night he sat up for much of the evening and was able to sit down to eat. mostly he's been eating standing up since we got home. (Sorry if this is too much detail...).
Anyway, we're watching it. It is this kind of thing that concerns me. As an untrained person, you just don't know what things are "normal" and what aren't. I am really glad we have the nurse coming to help us sort those issues out.
Otherwise, he's doing well and taking things day by day. Notes, cards, emails, visits are all welcome. Especially now that I am going back to work.
Starting Tuesday, I have been going into work for half a day. I don't feel comfortable leaving him the entire day yet. He's not very mobile and I'm a little concerned he will attempt to do something he should (nooooo, not Steve!) and have an problem when I'm not here. Maybe that's being overly concerned, but I would rather err on the side of caution in this.
It's been hard being at work and worrying about him being home, but I think next week I'll be back in the office full time unless there's some unexpected setback.
Everyone at work is asking about him and sending him prayers and good wishes for a quick recovery. That's always nice to hear and it makes both of us feel very good. Tammy continues to cook for us (I think I will have to hire her on). She either assumes that I can't cook or that I am too tired to cook (the latter is really true). Last night, we had Chicken Marsala. Excellent.
For now that's about all that is new. I think our next big step will be an outing to the Colostomy Shop (no kidding, that is the name) to check out all the latest in "appliances" and get our monthly supply. I bought Rolf Benerske's book "Alive and Kicking" for Steve (and me) to read. He was a kicker for the Chargers and played several years in the NFL after having a colostomy. There are also magazines and web sites all devoted to having the most normal life possible after a colostomy. So there's a lot of info out there.
Steve seems to have adapted pretty well so far to the new way his body works and we are handling the maintenance of his "appliance". I know there may be down times in his mind as we go forward, but I am encouraged by how well he's doing with it so far.
Thanks again to everyone who has lent us a helping hand, commented on this blog or said a prayer. We are grateful to have so many who care!
A big issue for him has been that his backside is giving him a lot of pain so he's been unable to sit. That's forced him to lay down all the time - and we all know how lousy you can feel if you just lay down all the time. It turns out, according to our visiting nurse, that he is "pocketing" blood and discharge from the incision in his butt. We got a quick appointment with the doctor covering for our surgeon, who was out of town, yesterday. He pronounced this to be "something to watch." Apparently, there's a high rate of infection with this. But he didn't do anything proactive like aspirate it, which I thought/hoped he might.
However, if you press on the area, you get some of this pocketed blood and liquid out and that relieves the pressure. Last night he sat up for much of the evening and was able to sit down to eat. mostly he's been eating standing up since we got home. (Sorry if this is too much detail...).
Anyway, we're watching it. It is this kind of thing that concerns me. As an untrained person, you just don't know what things are "normal" and what aren't. I am really glad we have the nurse coming to help us sort those issues out.
Otherwise, he's doing well and taking things day by day. Notes, cards, emails, visits are all welcome. Especially now that I am going back to work.
Starting Tuesday, I have been going into work for half a day. I don't feel comfortable leaving him the entire day yet. He's not very mobile and I'm a little concerned he will attempt to do something he should (nooooo, not Steve!) and have an problem when I'm not here. Maybe that's being overly concerned, but I would rather err on the side of caution in this.
It's been hard being at work and worrying about him being home, but I think next week I'll be back in the office full time unless there's some unexpected setback.
Everyone at work is asking about him and sending him prayers and good wishes for a quick recovery. That's always nice to hear and it makes both of us feel very good. Tammy continues to cook for us (I think I will have to hire her on). She either assumes that I can't cook or that I am too tired to cook (the latter is really true). Last night, we had Chicken Marsala. Excellent.
For now that's about all that is new. I think our next big step will be an outing to the Colostomy Shop (no kidding, that is the name) to check out all the latest in "appliances" and get our monthly supply. I bought Rolf Benerske's book "Alive and Kicking" for Steve (and me) to read. He was a kicker for the Chargers and played several years in the NFL after having a colostomy. There are also magazines and web sites all devoted to having the most normal life possible after a colostomy. So there's a lot of info out there.
Steve seems to have adapted pretty well so far to the new way his body works and we are handling the maintenance of his "appliance". I know there may be down times in his mind as we go forward, but I am encouraged by how well he's doing with it so far.
Thanks again to everyone who has lent us a helping hand, commented on this blog or said a prayer. We are grateful to have so many who care!
Monday, September 17, 2007
The next step down the road
We saw Dr. Stephenson, the oncologist, today. He was very pleased with the surgical result and said Steve is currently disease free. He wants to do what he called "cleanup" which means 16 weeks of chemo. This will be different from the last round in that he will not carry an infusion pump.
He'll go once a week for six weeks on and two weeks off for two cycles. He'll get pumped up and that will be it for the week. This will be slightly higher dosage than what he had before but Stephenson said Steve did so well with the chemo he had before, that he was not anticipating any increased effects like nausea, hair loss, etc.
Come February, he said, this will be behind us. And then i think we're off to Hawaii
For the loyal reader, sorry about the lack of updates over the weekend. Steve's been up and down and it's a day to day thing.
He felt pretty good upon coming home and, of course, immediately over-did things. This mean't on Saturday he was in terrible shape. He was in pain, he was tired, he was depressed. Sunday he was feeling a little better, but he's definitely more tired and less mobile than he seemed day one. He's also got a lot of discomfort and some continued bleeding that is worrisome. We tried to reach the surgeon today to see if this was normal (who knows what's normal in these situations?) but didn't get a call back. I let steve make the call and I suspect he did not instill a sense of urgency - whereas if I had called I would have told them he was gushing blood and whatever else might be necessary to get a quick response. I guess that comes from my newsroom days: you know how to get someone to call you back!
He has started having bowel activity (how's that for a euphemism) and we now know that everything is working as expected. That was a big step because we were starting to be a little concerned when there hadn't been any activity in that department by Friday....
A big issue right now is managing Steve's expectations. He is depressed because he doesn't feel better and he's not a good one for letting things take their course. So keeping him encouraged and positive, while accepting the fact that this is going to take some time, is a bit of a balancing act. I hope I am up to it.
Our friend Peg came from Cincinnati to help us out over the weekend and it was wonderful to see her. Not only is she always fun to have around, interesting to talk to, etc.,,.. but she cooks! And she bakes. We got pretty used to having home baked bread over the past few days and I think we got spoiled pretty fast! This photo, BTW, is not the most flattering, so my apologies to Peg. Thank you thank you thank you for coming. It means so much to both of us. Friday, September 14, 2007
I'm tossin and turnin
It is wonderful to have steve back home, but i have to admit that I have not gotten a good night's sleep since. Now that I am the sole care giver with no machines to monitor his breathing and heart rate and no nurses to check in on him, I can't sleep. I am constantly looking over to make sure he's breathing, that he seems comfortable. The occasional noises of his stomach and the bag make me start: is that OK, are those normal.
My stomach growling sounds just like his and yet when his does it, I wonder: is that OK??
I'm sure that my warriness will pass but for now I'm on pins and needles worrying about every wince and keeping all the piles of notes, books, pamphlets close at hand to check on what to do at each new sign.
Steve, on the other hand, seems to be adjusting great. He does not complain or anything and his attitude is amazingly good. When I grow up, I want to be more like him!
Our friend Peg, from Cinci, is arriving this morning. It will be good to have her here and a little extra help for the next few days. Besides that, she's is another irrepressible spirit.
My stomach growling sounds just like his and yet when his does it, I wonder: is that OK??
I'm sure that my warriness will pass but for now I'm on pins and needles worrying about every wince and keeping all the piles of notes, books, pamphlets close at hand to check on what to do at each new sign.
Steve, on the other hand, seems to be adjusting great. He does not complain or anything and his attitude is amazingly good. When I grow up, I want to be more like him!
Our friend Peg, from Cinci, is arriving this morning. It will be good to have her here and a little extra help for the next few days. Besides that, she's is another irrepressible spirit.
Thursday, September 13, 2007
Home
Like the best flight you've ever had - the first day home was uneventful. It was great to have him home but I'll admit I was a little concerned about whether or not I was prepared to care for him. Even though, if you saw him, he seems pretty normal - I know he's weak, fatigued, very sore and learning about the way his body now works, which can be a little scary when you don't know what to expect.
I worried for a couple of days about the dogs. They were so anxious to see him, I was concerned about them jumping up (well, actually, only Bogey - Sable jumps in place when she's excited but she never puts her paws on you). The first few minutes there was a lot of "No!" and "Off!" and Steve sheilded his abdomen but standing up against a chair. But once they calmed down, they were happy just to have him pet them and then all was well.
Steve was able to walk up the stairs last night to sleep in our room, instead of staying on the main floor and sleeping on the sofa as we first thought might be necessary. He slept well and, even though it was so good to have him back home, back next to me and to hold his hand, i didn't sleep that well. I just kept listening - to his breathing, to the new sounds of his body. This morning, I had to give him an injection - a blood thinner to prevent clots that you are more susceptible to after abdominal surgery. I was nervous about doing it, but because it's a subcutaneous injection, you almost can't miss. We have 9 more of those to go. By that time, I'll be ready for nursing school. Well, that may be a slight overstatement.
On Thursday afternoon, a home health nurse came by and took vitals, looked at his incision, offered advice on diet to get his bowel going - like warm prune juice (ummm, ummm, good!).
Sandra Brockman and Carlotta Bell, from work, came by with a car load of food from Steve Brandt, my boss. That was very thoughtful and will make it easier for me at least for the next couple of days. Especially nice was the Brick Street Carrot Cake!
We had a visit as well from Gerry Riley who came by to mow our grass. This is above and beyond the call, but he insisted that we not go out and hire someone to do as had been our plan. Gerry's a good friend and we really appreciate the help.
With Steve safely resting on the sofa, I went to the store and then stopped by at a local frame store run by a friend of ours whose husband had bladder cancer and just last month had surgery. We shared our stoma stories and quickly became a support group of two.
Some of you have asked if I'm taking this blog down and actually I'm planning on continuing to post to it for a while. We've still got some steps to take down the road to recovery and even if you guys stop reading, in some ways this is a good catharsis for me.
So I'll keep posting. Your comments are always appreciated. Steve has enjoyed reading them and it's made us both realize how important our friends and family are. Besides that, it's good computer practice for him!
Wednesday, September 12, 2007
Thought for the day (from Gerry Riley)
Handle every situation like a dog ....
If you can't Eat it, Play with it or Chew it up…
Piss on it and Walk Away
Getting out today
One more ostomy lesson and we're outta here!
The surgeon removed Steve's staples this morning and pronounced that he was ready to go home. We are, in fact, more than ready. So now we begin the long wait between the thought and the action. At the rate things move, we think we'll be out of here around 4-ish.
We also learned that when they took the epidural out, they were supposed to continue giving him a shot in his abdomen to prevent blood clots. But they didn't, so they are sending us home with the medication and needles. I guess this will be a new skill I'll learn.
Right now, it's lunch time and then hopefully the ostomy nurse will be back for our "to the skin" practice session with the bag.
Steve just asked for a pain shot to help him prepare for the ride home -- do you think that's a comment on my driving??
The surgeon removed Steve's staples this morning and pronounced that he was ready to go home. We are, in fact, more than ready. So now we begin the long wait between the thought and the action. At the rate things move, we think we'll be out of here around 4-ish.
We also learned that when they took the epidural out, they were supposed to continue giving him a shot in his abdomen to prevent blood clots. But they didn't, so they are sending us home with the medication and needles. I guess this will be a new skill I'll learn.
Right now, it's lunch time and then hopefully the ostomy nurse will be back for our "to the skin" practice session with the bag.
Steve just asked for a pain shot to help him prepare for the ride home -- do you think that's a comment on my driving??
Tuesday, September 11, 2007
Food, glorious food
It started with some graham crackers, cranberry juice and coffee. Then came a full meal -- pork loin, mashed potatoes, carrots, pudding and a roll and butter.
With a little food to work on, Steve's stomach is certainly rumbling now. And that's a good thing. Dr. Trocha was in today and said he would be taking the staples out of his surgical wound tomorrow. Whether that means we'll get to go home tomorrow remains to be seen.
We walked and played some cards, watched some TV and hung out waiting for food. It's been a pretty mundane day - which is fine with me.
Kevin came to visit today and brought Steve some golf gifts including an automatic putting machine. Steve probably wont be able to golf again this season but if he worked on his putting he could come a lot closer to beating me. I guess I'll have to match his practice!
With a little food to work on, Steve's stomach is certainly rumbling now. And that's a good thing. Dr. Trocha was in today and said he would be taking the staples out of his surgical wound tomorrow. Whether that means we'll get to go home tomorrow remains to be seen.
We walked and played some cards, watched some TV and hung out waiting for food. It's been a pretty mundane day - which is fine with me.
Kevin came to visit today and brought Steve some golf gifts including an automatic putting machine. Steve probably wont be able to golf again this season but if he worked on his putting he could come a lot closer to beating me. I guess I'll have to match his practice!
The things you wish for!
Steve passed gas! Who knew that you would ever be excited about such a thing. But that was the big signal we've been waiting for that means something to eat should be on the way. I'm sure it will be broth and jello, but that's a huge step up from the steady diet of ice chips he's been on.
I am getting some things done around the house this morning since Kevin Fisher was going in to visit Steve. I'm sure it will be nice for him to see someone other than me. Anyone local who's interested in stopping by, I'm sure Steve would be up for it.
More later.
I am getting some things done around the house this morning since Kevin Fisher was going in to visit Steve. I'm sure it will be nice for him to see someone other than me. Anyone local who's interested in stopping by, I'm sure Steve would be up for it.
More later.
Monday, September 10, 2007
These booties are made for walking
You can't keep a good man down... Steve was up and walking this morning and had already done three turns around the third floor before I even got here. He got disconnected from his wound drain this morning, so he's only got the IV now. We went out for a stroll a little while ago, admiring the artwork in the halls (I'm not kidding. They have some really good stuff), nodding to the nurses and chatting.
The ostomy nurse was by again and we had more practice. But we need to do it actually on him - rather than the plastic mannequin stoma that they bring in to teach you on. However, since he still hasn't had any solid food, it seems likely we'll be here for another day or two so she'll come back on wednesday.
On the food front, Steve still's on ice chips! It's a wonder he can walk as weak as he must be. We are waiting for some gas to pass - that's the sign we need that the bowel is ready to handle some food.
John Wartinger called this morning from Washington (state) and said he was going to see about finding a whoppee cushion to ship to us!
The ostomy nurse was by again and we had more practice. But we need to do it actually on him - rather than the plastic mannequin stoma that they bring in to teach you on. However, since he still hasn't had any solid food, it seems likely we'll be here for another day or two so she'll come back on wednesday.
On the food front, Steve still's on ice chips! It's a wonder he can walk as weak as he must be. We are waiting for some gas to pass - that's the sign we need that the bowel is ready to handle some food.
John Wartinger called this morning from Washington (state) and said he was going to see about finding a whoppee cushion to ship to us!
Sunday, September 9, 2007
Sunday wrap up
Nothing too exciting, but we did get a good look at the stoma (the external part of the intestine where the colostomy bag is) when the nurse cleaned it up and changed his dressings. All the medical types ooh and aah like it's a DaVinci of stomas, so i guess that's a good thing. Tomorrow, we'll be getting some hands on pratice with changing the bag and attaching the wafers (that adhere to the skin and that the bag attaches to). I am really looking forward to that! :)
Still no food and it's looking now like he won't be leaving the hospital before wednesday. Probably won't be any real solid food (other than the clear liquids that should start tomorrow) until Tuesday. We're not going to get out of the hospital until they see his bowel working and waste moving out of the stoma, etc...
Several phone calls today -- from Carol and Tom in Des Moines, my family in Las Vegas, Steve's son Jason in NJ, Terri who got back to Cinci uneventfully. It was great to talk to everyone and I know it make Steve feel good to know so many people are thinking of him.
Now I am off to crash. I want to be fresh and alert for my next stoma training!
Still no food and it's looking now like he won't be leaving the hospital before wednesday. Probably won't be any real solid food (other than the clear liquids that should start tomorrow) until Tuesday. We're not going to get out of the hospital until they see his bowel working and waste moving out of the stoma, etc...
Several phone calls today -- from Carol and Tom in Des Moines, my family in Las Vegas, Steve's son Jason in NJ, Terri who got back to Cinci uneventfully. It was great to talk to everyone and I know it make Steve feel good to know so many people are thinking of him.
Now I am off to crash. I want to be fresh and alert for my next stoma training!
With the Jets, you need morphine
Steve and I are sitting here watching the Jets game. I have promised to be well behaved, not to swear, scream, or pound on anything. This is far more difficult than I thought, but I am doing my best.
Today's been a good day so far. The epidural, the catheter and some other tubing you really don't want to know about were all removed today. That's making him feel much better, although he's starting to feel some pain. The nurse just came in to give him some morphine. She said she was giving him 6 mgs, but he could have 8 so if he needed more it was OK. Sitting here watching the Jets typical performance, I asked her if he didn't take it all, could i have the other 2 mgs??? She launghed but did not hook me up!
Still no food. One thing that's amazing: when you are not able to eat you realize just how many commercials on TV are about food. It must be maddening for him. The doctor who came by this morning said food maybe Monday. AAARGGHH. I didn't know you could go this long without some nourishment!
Today's been a good day so far. The epidural, the catheter and some other tubing you really don't want to know about were all removed today. That's making him feel much better, although he's starting to feel some pain. The nurse just came in to give him some morphine. She said she was giving him 6 mgs, but he could have 8 so if he needed more it was OK. Sitting here watching the Jets typical performance, I asked her if he didn't take it all, could i have the other 2 mgs??? She launghed but did not hook me up!
Still no food. One thing that's amazing: when you are not able to eat you realize just how many commercials on TV are about food. It must be maddening for him. The doctor who came by this morning said food maybe Monday. AAARGGHH. I didn't know you could go this long without some nourishment!
Phone number change
I just for the first time tried to call Steve's room and found that the instructions the nurse gave me, which I passed on, aren't right. Dial 864-455-7000 and then 83411 (not 73411)...
Saturday, September 8, 2007
Saturday wrap up - on Sunday morning
I started this post late Saturday night, but had to crash, so I'm finishing it Sunday a.m.
Taking the computer to the hospital was a great idea, but would have been better if I'd remembered to take the charger!
Today was a pretty good day: Steve sat up in the chair a couple of times and was even able to stand up for a few minutes. The effort exhausted him and he has very little strength right now, but he's had no food - and not even any nutrients through the IV - so that's understandable. But it makes it even more impressive that he was able to do it.
But the really big news is that he and Terri slept together. Well, in a manner of speaking. She crashed for a couple of hours in the sleep chair while he got -- finally -- two solid hours snoozing. And I was left to make sure BOTH their pillows were poofed and blankets were pulled up. Of course, that did leave me in control of the TV!
A couple of phone calls - from Kristin, my sister and brother-in-law and my mom - also brightened his day.
Very little on the medical front. Hopefully they will remove the epidural today and that will get the other tube out of his nose. Following that by about six hours, they'll remove the catheter. All of that will then - trigger what he wants almost more than anything else: food. The poor guy hasn't eaten anything since noon on Tuesday, so even Jello and broth would seem like a steak dinner at Sam and Harry's at this point. The slow introduction of clear liquids will be the first test of his intenstinal functioning.
Am getting reading to take Terri to the airport. Having her here with me made such a huge difference. I can't imagine getting through the past couple of days without her. The same is true for Tammy Sullivan, Coreen Fisher and family, who have been taking care of Bogey and Sable for us. They've come over a couple of times each day to let them out, throw the ball and feed them. I know the dogs, who are very weirded out by the confusion in their universe appreciate it and it makes a big difference that I haven't had to worry about that. No matter how strong you think you are, situations like this remind us that we are all connected and - as Tammy would say - you can't play this game alone.
More later on today from the hospital. Steve is definitely up for phone calls and I think once he gets the epidural and the cath out, and gets something to eat, he'll be up for a visitor or two.
Taking the computer to the hospital was a great idea, but would have been better if I'd remembered to take the charger!
Today was a pretty good day: Steve sat up in the chair a couple of times and was even able to stand up for a few minutes. The effort exhausted him and he has very little strength right now, but he's had no food - and not even any nutrients through the IV - so that's understandable. But it makes it even more impressive that he was able to do it.
But the really big news is that he and Terri slept together. Well, in a manner of speaking. She crashed for a couple of hours in the sleep chair while he got -- finally -- two solid hours snoozing. And I was left to make sure BOTH their pillows were poofed and blankets were pulled up. Of course, that did leave me in control of the TV!
A couple of phone calls - from Kristin, my sister and brother-in-law and my mom - also brightened his day.
Very little on the medical front. Hopefully they will remove the epidural today and that will get the other tube out of his nose. Following that by about six hours, they'll remove the catheter. All of that will then - trigger what he wants almost more than anything else: food. The poor guy hasn't eaten anything since noon on Tuesday, so even Jello and broth would seem like a steak dinner at Sam and Harry's at this point. The slow introduction of clear liquids will be the first test of his intenstinal functioning.
Am getting reading to take Terri to the airport. Having her here with me made such a huge difference. I can't imagine getting through the past couple of days without her. The same is true for Tammy Sullivan, Coreen Fisher and family, who have been taking care of Bogey and Sable for us. They've come over a couple of times each day to let them out, throw the ball and feed them. I know the dogs, who are very weirded out by the confusion in their universe appreciate it and it makes a big difference that I haven't had to worry about that. No matter how strong you think you are, situations like this remind us that we are all connected and - as Tammy would say - you can't play this game alone.
More later on today from the hospital. Steve is definitely up for phone calls and I think once he gets the epidural and the cath out, and gets something to eat, he'll be up for a visitor or two.
Dumb little note from the elevator: Saw a guy with a t-shirt on
that read "I would be happy to engage you in a battle of wits but you appear to
be unarmed." I loved that.
Reporting from a remote location
I brought my laptop to the hospital to see if I could get connected and be able to post more stuff, more quickly. And, obviously I can. However, there is not too much new to tell - except that Terri and I got busted for smoking in the parking garage! Next time, it's a fine. Yeah, right :).
Steve did not sleep this morning, as I had hoped. Apparently, still not comfortable enough to really doze off. He's nodded off occasionally, but they are really little cat naps - 10-15 minutes and he's awake again. He's also STARVING. The poor guy hasn't eaten anything since noon on Tuesday and right now they also aren't giving him any nutrients in his IV - just hydration.
Doctor says that epidural will be removed tomorrow and six hours after that the catheter can come out. Getting rid of the epidural is another big step toward nourishment.
Steve got his first phone call -- from his daughter, Kristin. That made him feel good. And right now, he's watching the golf on TV. So, all is quiet on the Southern front and, actually, it's much like any other Saturday: I'm on the computer and Steve's watching golf!
Steve did not sleep this morning, as I had hoped. Apparently, still not comfortable enough to really doze off. He's nodded off occasionally, but they are really little cat naps - 10-15 minutes and he's awake again. He's also STARVING. The poor guy hasn't eaten anything since noon on Tuesday and right now they also aren't giving him any nutrients in his IV - just hydration.
Doctor says that epidural will be removed tomorrow and six hours after that the catheter can come out. Getting rid of the epidural is another big step toward nourishment.
Steve got his first phone call -- from his daughter, Kristin. That made him feel good. And right now, he's watching the golf on TV. So, all is quiet on the Southern front and, actually, it's much like any other Saturday: I'm on the computer and Steve's watching golf!
Morning update: a big step
This morning they took the tube out that was running into his stomach -- a big step because that was primarily to keep his stomach settled and keep him from vomiting. So taking it out means he's improved enough that they feel that risk has passed. And it's the first step toward letting him have maybe (i hope) some liquid. He still hasn't had anything other than the "mouth mops" to keep his lips and gums moist.
It's also a big step to him getting some rest. It was very uncomfortable for him and did a lot of beeping. Unfortunately, the good night's sleep we hoped he would get last night, didn't happen. The nurse said he was feeling much better without the tube and was sleeping solidly now. So we'll probably give him a few hours to rest now.
He also got rid of his superman boots - massaging contraptions they wrapped around his legs that keep the circulation moving and prevent blood clots. He said they were getting too hot and they took those off. So he's 100% more comfortable this morning.
Best guess seems like Steve will be in the hospital until at least Tuesday. Some have asked for the hospital address: Greenville Memorial Hospital, 701 Grove Rd., Greenville, SC 29605. Rm 3411. But for cards - knowing the postal service - best to send them to the house.
It's also a big step to him getting some rest. It was very uncomfortable for him and did a lot of beeping. Unfortunately, the good night's sleep we hoped he would get last night, didn't happen. The nurse said he was feeling much better without the tube and was sleeping solidly now. So we'll probably give him a few hours to rest now.
He also got rid of his superman boots - massaging contraptions they wrapped around his legs that keep the circulation moving and prevent blood clots. He said they were getting too hot and they took those off. So he's 100% more comfortable this morning.
Best guess seems like Steve will be in the hospital until at least Tuesday. Some have asked for the hospital address: Greenville Memorial Hospital, 701 Grove Rd., Greenville, SC 29605. Rm 3411. But for cards - knowing the postal service - best to send them to the house.
Friday, September 7, 2007
Day 2 and looking good
It's 12:21 a.m. Saturday and I'm sorry it's so late, for those of you who have been checking this blog every hour for an update :). Steve got out of ICU this afternoon and moved into a private room. Very nice, actually with a TV, DVD player and an assortment of nurses for him to hit on.. Terri and I left him in the care of nurse Angie who promises to match him barb for barb and story for story. She'll be on all weekend and I think he'll like that.
This morning when we arrived, he was already sitting up in a chair. That's terrific at this stage. He even managed mostly by himself with just a little assistance to get from the chair back into bed. Of course, the effort exhausted him and he laid on the "green button" pretty good afterward, but still it was quite impressive.
Once he got settled in his room, Dr. Trocha, the surgeon came by and reiterated to Steve what he had told me yesterday. That the pathology on the tumor showed it to be necrotic (dead) and that the margins were all negative -- doctor-speak for we got it all. The fact that the radiation killed all the cancer cells is very important since during surgery cells slough off and it's important that those cells were dead. He did say that there would be more chemo later on, which is probably a good thing medically - to make sure no cancer can get a foothold anywhere else.
Steve continues to be Steve and very positive, despite the setback of the colostomy. Terri says he has a "devlish positive attitude." This morning he told me first thing that he had "had a talk with himself" and decided that he could and would handle this. We did have our first ostomy lesson from the special nurse today. There will be more lessons before we leave the hospital and we have to complete a "final exam" by attaching the bag before they will let us go home. Damn, such pressure!
Now that he's out of ICU, he may be able to sleep a full night - less activity, fewer machines, fewer cables and tubes. So Terri and I left him about 9:30, turned down the lights and he promised he would not sit up and watch ESPN -- or lure nurse Angie into the room on false pretenses! I hope he gets a good solid night's sleep tonight.
His sister, Gretchen, heads off to Florida tomorrow so they said their goodbyes. I know it was very important to Steve that she was here and Terri and I both enjoyed her company, her stories and her support.
Now that he's in a room, he can get phone calls, so if you want to call and talk to him it is 864-455-7000 and he's in room 3411. Wait until late morning, early afternoon though, so I can move the phone to a more accessible location. If it rang now there'd be no way for him to reach it.
Today (Saturday), I'll ask him if he thinks he'll be up for visitors - several people have asked about stopping by, which I think would be good for him. But I want to make sure he feels up to that first.
It looks like he'll probably be in the hospital until at least Tuesday. He still has a tube in his throat that has to come out before they can progress to any liquid or solid food. That's critical to seeing that the bowel is working and the bag is doing its job. So there's still several days to get through on that front. But he made a lot of progress today - and most importantly, he is unabashedly himself. He jokes, he's alert, he's holding conversations and looking forward to getting home.
This morning when we arrived, he was already sitting up in a chair. That's terrific at this stage. He even managed mostly by himself with just a little assistance to get from the chair back into bed. Of course, the effort exhausted him and he laid on the "green button" pretty good afterward, but still it was quite impressive.
Once he got settled in his room, Dr. Trocha, the surgeon came by and reiterated to Steve what he had told me yesterday. That the pathology on the tumor showed it to be necrotic (dead) and that the margins were all negative -- doctor-speak for we got it all. The fact that the radiation killed all the cancer cells is very important since during surgery cells slough off and it's important that those cells were dead. He did say that there would be more chemo later on, which is probably a good thing medically - to make sure no cancer can get a foothold anywhere else.
Steve continues to be Steve and very positive, despite the setback of the colostomy. Terri says he has a "devlish positive attitude." This morning he told me first thing that he had "had a talk with himself" and decided that he could and would handle this. We did have our first ostomy lesson from the special nurse today. There will be more lessons before we leave the hospital and we have to complete a "final exam" by attaching the bag before they will let us go home. Damn, such pressure!
Now that he's out of ICU, he may be able to sleep a full night - less activity, fewer machines, fewer cables and tubes. So Terri and I left him about 9:30, turned down the lights and he promised he would not sit up and watch ESPN -- or lure nurse Angie into the room on false pretenses! I hope he gets a good solid night's sleep tonight.
His sister, Gretchen, heads off to Florida tomorrow so they said their goodbyes. I know it was very important to Steve that she was here and Terri and I both enjoyed her company, her stories and her support.
Now that he's in a room, he can get phone calls, so if you want to call and talk to him it is 864-455-7000 and he's in room 3411. Wait until late morning, early afternoon though, so I can move the phone to a more accessible location. If it rang now there'd be no way for him to reach it.
Today (Saturday), I'll ask him if he thinks he'll be up for visitors - several people have asked about stopping by, which I think would be good for him. But I want to make sure he feels up to that first.
It looks like he'll probably be in the hospital until at least Tuesday. He still has a tube in his throat that has to come out before they can progress to any liquid or solid food. That's critical to seeing that the bowel is working and the bag is doing its job. So there's still several days to get through on that front. But he made a lot of progress today - and most importantly, he is unabashedly himself. He jokes, he's alert, he's holding conversations and looking forward to getting home.
Football and morphine
I found Steve in ICU last night looking pretty much himself (actually very good for what he'd been through) and watching a football game. He seemed to be very alert - although he dozed off and on - but was having some serious pain. He laid on that magic button (self-medicating) pretty hard and I remarked that I wish I had something like that when I watched the Jets play! We didn't see the doctor last night so I don't have much more medical information. The nurse said his blood pressure was very good and other vitals were strong.
We held hands and watched the game and nattered on about nothing. At one point, Steve said he was trying to decide which of his nurses he wanted to give him a sponge bath!
We didn't talk more about the colostomy - I stayed away from that subject as much as I can until we have some more medical expertise around to answer the many questions we will both have.
I spent some time this morning researching more about life after colostomy and Joe McDonald sent me some other web sites with info. There's a lot of evidence that really life can be pretty normal with some changes and dietary limitations. The emotional changes, however, will be the biggest hurdle. We are lucky to have so many friends and such strong support to help us through that.
We held hands and watched the game and nattered on about nothing. At one point, Steve said he was trying to decide which of his nurses he wanted to give him a sponge bath!
We didn't talk more about the colostomy - I stayed away from that subject as much as I can until we have some more medical expertise around to answer the many questions we will both have.
I spent some time this morning researching more about life after colostomy and Joe McDonald sent me some other web sites with info. There's a lot of evidence that really life can be pretty normal with some changes and dietary limitations. The emotional changes, however, will be the biggest hurdle. We are lucky to have so many friends and such strong support to help us through that.
Thursday, September 6, 2007
Steve's out of surgery
The really good news is that the surgeon says they got all the cancer. The less than great news is that they were unable to preserve his plumbing and had to do a colostomy. This is certainly not what we would have hoped, but is far less intrusive or life-changing than a less successful result as far as the cancer is concerned.
The surgery took about four hours, followed by 2 hours in recovery and now he's in ICU. Thank God for Terri, Olivia and Gretchen (Steve's sister) waiting with me! We finally got to see him in ICU around 4:45. He really looked surprisingly good - given what he's been through. And, despite being in a lot of pain - and really laying on the morphine button - he was shockingly alert. Moreso than I would have wanted, to be honest. I didn't want to have to tell him about the colostomy today, but he pinned me down and asked me directly and I could not - would not - lie to him.
Still it was heartening to see him gamely trying to make a joke or ask if he "looked good enough" to see his girlfriends when Olivia and Terri were coming into the ICU. He is, and always will be, Steve - colostomy or not.
The ICU is closed for visitation right now for rounds and opens up again at 8:30. Terri and Gretchen went back to the house and I came back to spend a little time with him. I can stay here all night if I want, but I think when I'm here he is trying to stay awake. And he really needs to sleep as much as he can right now. So I'll probably spend a half hour-45 minutes with him and then when he falls asleep (deep enough to snore like he did when we were in before), I'll head home and get some much needed rest myself. I also want to spend some time online looking up information on colostomy so I have intelligent questions for the doctor tomorrow.
I was fairly numb when he talked to me today after the surgery. I was not prepared for it - even though we knew it was a possibility - after all the chemo and radiation we felt good that it was a remote possibility. I'll know more tomorrow, I hope, about why that wasn't the case.
Nonetheless what I kept repeating to him is what I have to keep repeating to myself: they got all the cancer. Truly, that's what really matters.
Laura
The surgery took about four hours, followed by 2 hours in recovery and now he's in ICU. Thank God for Terri, Olivia and Gretchen (Steve's sister) waiting with me! We finally got to see him in ICU around 4:45. He really looked surprisingly good - given what he's been through. And, despite being in a lot of pain - and really laying on the morphine button - he was shockingly alert. Moreso than I would have wanted, to be honest. I didn't want to have to tell him about the colostomy today, but he pinned me down and asked me directly and I could not - would not - lie to him.
Still it was heartening to see him gamely trying to make a joke or ask if he "looked good enough" to see his girlfriends when Olivia and Terri were coming into the ICU. He is, and always will be, Steve - colostomy or not.
The ICU is closed for visitation right now for rounds and opens up again at 8:30. Terri and Gretchen went back to the house and I came back to spend a little time with him. I can stay here all night if I want, but I think when I'm here he is trying to stay awake. And he really needs to sleep as much as he can right now. So I'll probably spend a half hour-45 minutes with him and then when he falls asleep (deep enough to snore like he did when we were in before), I'll head home and get some much needed rest myself. I also want to spend some time online looking up information on colostomy so I have intelligent questions for the doctor tomorrow.
I was fairly numb when he talked to me today after the surgery. I was not prepared for it - even though we knew it was a possibility - after all the chemo and radiation we felt good that it was a remote possibility. I'll know more tomorrow, I hope, about why that wasn't the case.
Nonetheless what I kept repeating to him is what I have to keep repeating to myself: they got all the cancer. Truly, that's what really matters.
Laura
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