Thank you all so very much

Hi Everyone,

This will be my final post I believe to How's Bob Doing.

I just wanted to thank all of you for everything you have done for Bob and I over the past 8 months. You have all helped us so much.

Thanks for all the wonderful meals people sent us. Thank you to the good friends who took care of our yard and helped me with the house. Thank you for the cards of encouragement. Thank you to so many people for listening to me, talking with me and helping me through some of the tougher days. Thank you to everyone at my job, for either giving me time off, or picking up my slack when I wasn't there, or keeping things going. Thank you so much for calling and visiting us and keeping us going.

Thanks for reading this blog and responding with all your kind words of encouragement. It has meant so much to me to be able to express myself through this and to know that you all cared enough to keep tabs on us.

I also want to make sure you all knew how much Bob appreciated all these things as well. He told me many times how blessed he felt to have such wonderful people in our lives. It made him, and me, feel that we were not in this thing all alone.

I have some tough days ahead of me, I know that. The one thing that helps me face this is knowing that you all care and will be there for me. Thank you from the bottom of my heart.

Carol

Arrangements

Hi,

I have finalized the arrangements for Bob's memorial service and wanted to share the info with you.

First, Bob's request was to be cremated, so we were able to delay the service till after Christmas. The service will be on Friday December 28th at Providence Funeral Home in Taylor. We will have visitation starting at 11am. The service will begin at 1pm. After the service there will be a 2 hour reception at the Clark Mansion, not too far from the funeral home, also in Taylor.

Directions to the funeral home:

From Austin/Round Rock - Take Highway 79 East to Taylor. As you are coming into Taylor turn left onto Highway 397. Stay to the right on the entrance ramp, and then turn/veer right onto 397. The funeral home is just a short way down this road on the right.

Directions to Clark Mansion from the funeral home:

Turn left out of the funeral home parking lot back onto 397 (also known as Carlos G. Parker Blvd). After about a half mile, more or less, turn left onto Lake Drive. About another half mile, more or less, you will see a huge white Victorian house on the left, at 2112 Lake. This is Clark Mansion; turn in here and park where you can.

I hope you all can make it. Thanks again for all the kind thoughts you have been sending my way. It has really comforted me to hear from you.

With love, Carol

December 20, 2007

As many of you have already heard, my Bob passed away today at noon. He was a fan of the movie High Noon, so I like to think he would have appreciated that. Though my loss is tremendous, it is mitigated by the love and concern you have shown me and the both of us. I can't even begin to tell you how appreciative we both have been for all the kindnesses people have shown us over the last seven months. People have brought us food, taken us to appointments, sat with us, cleaned for us, mowed our yard, listened to our fears, and mostly just loved us and been there for us. And I would also like to thank all of you who kept up with this blog. It's meant a lot to me see all of your sweet comments, or just to know you were reading it.

Thank you all so much for everything, from the bottom of my heart.

I'll be going with my aunt tomorrow to make arrangements for a memorial service, though I think it will probably be next Thursday or Friday. I will keep you posted.

Take care everyone. You are all in my thoughts, as I know we are in yours.

Carol

Wednesday Morning

Not much news. Again things are about the same. Bob's breathing is continuing to get more and more shallow. But he appears comfortable, and not in any distress. I'm by his side, as is our dog, Bridgette. She guards him, and growls if she's not sure about someone who gets too close to him.

Thanks again for everyone's concern and thoughts. I couldn't make it through this without each of you.

Carol

Tuesday Morning

Hi,

Things are mostly the same here. Bob was semi-conscious for a little while yesterday afternoon. But he has been resting comfortably since then. The Hospice nurse came out yesterday and checked him over. I'm going to see if they can come again today, he seems like he has a little fever.

My aunt got here just fine. It's nice to have her with me.

Carol

Quick Update

Hi Everyone,

Just a quick update on things. Bob hasn't been awake since 11am Sunday morning. Hospice came out to see us and he was non-responsive. He's not on the morphine any more. He doesn't appear to be in any distress. His blood pressure was low yesterday and I would imagine it's even lower today. The Hospice nurse is supposed to come out again today.

As for me, my aunt Frankie is coming in from Nashville this afternoon to be with me.

Thank you to everyone who is praying for us and sending us good thoughts. We appreciate you all so much.

Carol

Things are changing quickly

Bob is doing much worse. His breathing is very labored. He is on morphine pretty much round the clock as of yesterday. I talked to the Hospice nurse this morning. She was very helpful and comforting. But it does appear that we are more likely looking at days instead of weeks.

More as I can.

Carol

Best Laid Plans...

Hi Everyone,

We got really tough news this week. As you know from my last post, this was the week we were going back to Temple to resume the radiation treatments. We went up Monday and Bob had a treatment that afternoon. That night he started having more trouble than usual breathing and had a very restless night. Neither of us slept hardly a wink. The next day we called his radiation oncologist and he agreed with us that Bob should go to the emergency room. We spent most of Tuesday waiting in the emergency room. They took us back quickly, but then we had hours of waiting around while they ran tests and then conferred with other doctors.

Late that afternoon we received word that they had decided to admit him to the hospital so that they could do a broncoscopy the next day. That's where they put a camera down his trachea to see what's going on. The same doctor who has been working with Bob since the beginning of this on his breathing issues did the test, Dr. Dekeratry. He's really a very nice man. The results of the bronscoscopy are that the tumor has grown significantly into Bob's trachea. The way he drew it for me it looks like it takes up about four-fifths of Bob's trachea at one point. That's why he's having so much trouble breathing.

I don't know why this news is so different from the report we received two weeks ago that the tumor had shrunk. This doctor said that this latest info was also confirmed by the very same cat scan. But anyway, knowing this two weeks ago wouldn't have changed anything.

So, the doctor said that the only treatment at this point was to place a stint in Bob's trachea like the one in his esophagus. But it's not a really good option. It's quite a bit more complicated than the other stint. They would have to place him under general anesthesia, which could of course be dangerous. After it was placed there would be more chance for it moving and for several other complications. Plus Bob would have to do some type of breathing treatment four times a day. After hearing that, and seeing that the doctor was not hopeful for it extending his life either, Bob decided against it.

So, at this point Bob has decided to suspend all treatment, no more radiation, or drugs or needles or trips to different cities, or endless doctors' visits. He's completely exhausted. We asked the doctor what we're looking at time wise, and although he can't know for sure of course, his best estimate was weeks.

We came home Thursday, and Hospice has already been to the house to talk with us. Actually they met with us before we even left the hospital. They seem very nice and should be able to help us with our goal of having Bob be able to stay at home and be as comfortable as possible. At this point Bob and I are trying to get all our ducks in a row, speak with our friends and family, and be together.

Bob is having trouble breathing and talking, he's very tired, but he's still able to sit up and play on the computer and eat small meals. We plan to spend a lot of time watching old movies and hanging out together. I am taking some time off work so I will be here most of the time. My aunt Frankie is going to come down and help me when it gets to the point where Bob needs someone here all the time.

I guess that's all for now. I'll try to post more frequent updates now as things change.

Take care everyone,

Carol

No Real News, Just Updating

Hi Everyone,

Just thought I'd take a minute to update. Everything is going pretty well for us right now. We had a very restful Thanksgiving week. I appreciated having some time to rest as much as Bob. Being at home, and not at Temple, this past week was also very nice. We have one more week before we will go to Temple for the last two weeks of radiation. We're going to take a couple of days next week and try to get some other appointments out of the way. Bob's getting his teeth cleaned Monday and maybe his nails done one day as well.

We saw our regular doctor yesterday because Bob's back has been bothering him a lot. About 30 years ago Bob fused a couple of discs in his lower back while driving his Volkswagen bus from Miami to New Orleans. It hasn't really bothered him for all this time until now. The doctor speculated that it might be because he has lost weight and this shifted things around and caused it to start hurting him. There's also some degeneration and arthritis there now. Anyway, the doctor prescribed a couple of things, a pain pill and some naproxyn, so we'll see if those work. Bob thinks it might be slightly better today. Otherwise Bob is feeling about the same. He's still coughing and very very tired.

I've decided that when we start the two weeks of radiation that I will take a few days off work during that time so that I don't have to spend so much time driving back and forth between Austin and Temple. Those weeks I plan to work Tuesday which is our meeting day, and Saturday night, since we will be back home by that time. And I'll take off Wednesday, Thursday and Friday. I think that'll help me manage my stress level much better and make me a better person to be around, :-).

That's about all that's up with the Tureauds this week. Hope you are all doing great and getting your shopping done.

Carol

Latest Cat Scan Results

Bob and I had some pretty good news Wednesday. According to a cat scan Bob had on Monday, the tumor in his esophagus has shrunk 30%. This was as much as the doctor thought it would shrink total after the treatment, so for it to have shrunk that much already, is good news. Dr. Cheung said he believes that it will continue to shrink for 5-6 weeks after the completion of the treatment, so we should see it get even smaller.

The doctor wants to do 10 more treatments to get the tumor to shrink even more. He wanted Bob to go ahead and start the final 10 this Monday, but Bob is incredibly exhausted and asked the doctor if he could have a couple of weeks off. The doctor agreed to that, so that's where we are right now. Bob will begin the 10 treatments on December 10th.

So we have a couple of weeks where we actually get to stay in our house, and not a hotel, and no super long drive for me. Yesterday was the first day for me in a month that I didn't have to go somewhere. It was really nice. We had a very low key Thanksgiving dinner, the two of us, and rested and it was marvelous. We hope that everyone else's Thanksgiving was as lovely as ours felt.

Happy Holidays everyone!

Carol

Radiation, Hotels and a Passing

Well, let me start by letting you know that our dog Walter passed away peacefully during the night. I've been talking on here about how his health has been declining lately. Yesterday he didn't eat, and seemed very tired, but was still loving and wanted to be right with his family. He was pretty still late last night, but didn't seem to be in any pain or discomfort. When I checked on him this morning, he was gone. He was a good boy, and we'll miss him very much.

As for Bob and I, we are still in the middle of getting him to his radiation treatments. I posted last time I think, that Scott and White Hospital and the LaQuinta Inn had given us a room free for three nights last week. That worked out so much better for Bob. He made all 5 of his daily treatments last week, didn't miss a one. I drove back and forth from Temple to Taylor to feed the dogs and then to work three days last week. I'm a little tired too, but we're both hanging in there.

I went in Wednesday to pay ourselves for Thursday night and was told that because they were booked up that we would have to pay a higher rate, of 89 dollars, rather than the 62 dollar special medical rate. So I was nice but made arangements to talk to the hotel manager the next day. I told him what our situation was and turns out he also has cancer. He said his prognosis is very good. He was a military career man, and war veteran who got cancer because of contact with agent orange. Anyway, he was so nice to us. He gave us the room for free Thursday night, and then for this coming week is giving us the rate of 49.00 a night, and then he said if he can swing it somedays he might be able to do 33.00 a night. We are so very very thankful. What a peach of a guy. That will really help us out. And speaking of helping us out, thank you so much Tamara. You know what for. You are also a peach.

Bob is still very tired, coughing a lot and feels short of breath frequently. So far the only side effect of the treatment we have seen is just worse fatigue. I'm hoping that's as bad as it gets, but I realize there could be more things happening in the upcoming weeks.

So we have 5 more treatments coming up this week. I'm going to try to make it to work every day. We'll see, I'll do my best anyway.

Carol

This Week's News

Well, things are looking up a little bit this week. Yesterday Bob and I came to Temple with the intention of staying in town whether we got help with a room or not. I had the number of the little hotel with me, so I figured we could stay there if nowhere else. So we trekked in for our three o'clock appointment. Luckily, at least Bob didn't have to wait more than a couple of minutes to go back for his treatment. So it looks like moving it to the afternoon is going to help. So that was already a good thing.

While he was back for his treatment, I called the hotel and inquired about the room. I asked the girl at the front desk if we could see the room before we committed to it. She said we could, but they might be all booked by the time we got over there. Seems that the "railroad people" were all staying there. I almost was going to give her my credit card info to book the room, but she said to call her back in a couple of minutes. This gave me some time to consider the phrase "railroad people" and what that might mean. So I decided to ask the receptionist in the clinic if she knew of a decent and not too expensive hotel nearby. She was very nice and she and the other lady gave me several places to try and even called some and got rate quotes for us. But then she called the social worker at the hospital and asked him if he could help us. Turns out he had already talked to the American Cancer Society about us. He told her he would be right down to talk to me. He started by saying there wasn't anything he could do, but I explained our situation to him, and I think it helped to explain it in person.

He took me back to his office and made some calls and long story short, ended up getting us three free nights at the LaQuinta Inn, which is where we are now. Scott and White only has 5 nights per month at hotels they can give out, so we were actually very lucky to get three of them. The other two had already been used. Anyway, we are going to stay here this week through Thursday night and then go home Friday. It's a decent room, we even have a little fridge and microwave. Yay!

Our pet sitter unfortunately, for her and us, just got out of the hospital after surgery and can't help us with the babies this week, so I will be going to Taylor to feed them every day. It won't be too bad. It won't be anymore driving than I have been doing actually, because I've been going from Temple to Taylor to Austin and then back again for a couple of weeks. So, I'll be fine. I'm not going to work today, because our appointment was during my meeting time, so it just doesn't seem worth it. I'm going to try to go tomorrow though. I do hate to leave Bob here alone though. Well, I'll just play it by ear and see how things are tomorrow.

Bob is still very tired, but he was able to make it in for his treatment today since we didn't have the long drive. So I am very glad we're here. He's having a little more trouble swallowing and breathing, but from what we've read and what the doctor has told us, that is to be expected at this stage of the treatment.

Here's a laugh for you. They have a free breakfast bar here at the hotel. I went over this morning to get some breakfast for us. They have one of those waffle makers, where you pour the batter into a little cup and then into the waffle iron for a couple of minutes. Well, the batter is in a dispenser with a spout that says "push" to get the batter to come out. Like a little faucet. I pushed, nothing happened. I pushed some more, nothing happened. I pushed a little harder. The whole dang spout popped off and every bit of batter left came gushing out all over my hands, the counter, the floor. I'm standing there yelling at the lady at the counter, "Hey Um, like, Emergency, or something". I'm weird in a crisis. She comes rushing over and was just not phased at all. I was so embarrassed, but the hotel people were super nice. I just took a few breakfast things and left after apologizing about a thousand times. No waffles. I don't believe I'll try waffles tomorrow either. As a matter of fact, I might be scarred for life by waffles.

Later, Carol

Radiation So Far

Well, the radiation situation has been kind of roller coaster. The first week went fine, but after the fifth treatment Bob became so fatigued that going to the rest of the treatments has become very hard. He only made it to three out of five last week, Monday, Wednesday and Friday. He said he was just too tired to make the trip up to Temple the other two days. On top of the drive being so tiring, there was an additional complication this week. The man who has the appointment right before Bob takes a long time to get ready for his treatment and we have to wait a long time for Bob's appointment. We had to wait 50 minutes past our appointment time on Wednesday. And when you're already exhausted like Bob is, that really doesn't help.

So we are trying to figure out a way to stay in Temple through the week so that Bob at least doesn't have to do the drive up there. We started by asking about Hospice care. They only help with in home care though. We thought they might have a facility to house us. We talked to our doctor's nurse and she called the hospital social worker, because they have funds to help pay for hotel rooms for people in our situation, but they said they can't help us, because we only live 40 miles away and not the required 60. We called the VA, which offers lodging they said, but they won't help, even though Bob receives services there too, because the treatment was ordered from Scott and White and not the VA. So then we called the American Cancer Society which was given to us by our doctor's nurse. They have tried to help us and we are still waiting to hear from them. A nice girl there has been working with us. The last we heard from her Friday afternoon was that they had approved help for us through their agency, but that because of their complicated set up with Scott and White Hospital, that the hospital social worker also had to approve it. And again, they have already denied us once. So, I think we are supposed to talk to the social worker on Monday, and Jennifer from the Cancer Society is supposed to talk to him as well. So we'll see if they can help.

If this doesn't work, the other option is to stay in a little hotel by the interstate in Temple. It's only 45 a night and we could probably swing that for 4 days a week, which is all we want anyway. I'm sure it will be fine. Although we haven't quite figured out what we'll do with the babies while we're there.

We thought alternately of the possibility of doing the treatment just three days a week, but the doctor said this would not work. He said that it would not be beneficial to have the same dose treatment only three days a week. And if he increased the dose for the three treatments we would run even more of a risk of Bob developing a fistula. Friday afternoon at the doctor's office was quite frustrating for many reasons. I asked very nicely if they could slip bob in before the guy who takes so long and they refused. Bob only takes 5 minutes and this guy takes over an hour, it just doesn't seem fair. I tried to advocate as strongly as I could without being obnoxious and I got nowhere. The best they could do for us was to move our treatment further into the afternoon so that maybe we won't have to wait as long, maybe. I know these people see patients every day in tough situations, but I just felt like they all could have a tried a little harder to be helpful. It seems to me that our doctor could try to advocate for us with the social worker, but this doesn't appear to be a possibility.

Sorry if I sound frustrated, it was kind of a tough week. Anyway, maybe something good will happen Monday. The girl from the ACS was very nice and very hopeful, like I said.

If I have more news Monday, I'll post again.

Carol

Meeting With Radiation Oncologist

Today we met with the radiation oncologist, Dr. Cheung. He talked to us for quite a long time and answered all of our questions. He seems to think that it is worth trying 4 weeks of radiation therapy. He let us know that it is not a cure, but it may produce some helpful effects. If it works, the potential good outcomes would be: the tumor shrinks, maybe as much as 30%; Bob might be able to breathe easier; and it might help with the cough. Also, if the tumor shrinks the doctor said he wouldn't expect it to begin growing again for possibly 6 months. Right now the tumor has doubled in size in a little over two months. Unfortunately, he also said that the radiation might produce no results at all.

The doctor thought the side effects of the treatment would be minimal. He said that for the first two weeks, Bob wouldn't notice anything. Starting at the third week he would begin to feel some burning, and his esophagus would be puffy and tender. He seemed to think that this would be manageable though. He said that there was medicine they could give him to numb his esophagus. These side effects should recede a week after the treatment ends.

The fear of a hole developing in his esophagus is still a real possibility and would be very dangerous as I discussed before back in my beginning posts. If this happens he might develop a serious and very hard to treat infection, or pneumonia. This possibility would last for at least three months after the treatment ended, as the tumor continues to respond to the radiation.

Bob and I considered all of this and decided to go ahead and try the radiation treatment. The doctor thought it was a good idea, and we would really like to have relief from some of the symptoms and a good six months. So we decided to try it.

We start Tuesday at 10:45am. We'll go for this treatment 5 days a week, Monday through Friday in Temple for 4 weeks. You can only have six weeks of radiation total on most body parts or the tissue starts to break down. The doctor seemed to think that at 4 weeks the side effects would be less. If Bob was responding very well, he could have the additional two weeks either at that time, or later if needed. The treatment itself is very quick, they said only 5 minutes, which is a huge good change from the chemo. I worry that all the travelling is going to be very tiring for Bob. He's feeling extremely tired these days. But we're just going to have to try and see how we do.

That's the latest. Also, as of last check, Walter has bounced back again; I don't even believe it. He started walking around and looking for food soon after my last post. What a dog.

Carol

The Cat Scan Results

Well, I won't beat around the bush, we did not get good news yesterday. The scan showed that the tumor has grown, and it has grown through and around the stint they put in several months ago. The doctor showed us the cat scan pictures and you could see that at one point in Bob's esophagus there is only a very narrow opening left. I would estimate that there is only about 10-20 percent of his esophagus remaining clear. The doctor was amazed that Bob has not had any trouble swallowing recently, but he hasn't. The doctor explained that the esophagus can expand, so that is probably the reason he has been able to swallow without any problems.

Because the tumor has grown so much and is growing so fast, the doctor doesn't think any more chemo will help. He said that we could try some other chemo drugs, but that there was only a 5-10% chance they would help, and it was much more likely they would make him sick, because he is so weakened now. So Bob decided against additional chemotherapy. The doctor suggested that we speak with the radiation oncologist about the possibility of radiation. He didn't give us much hope, however, of this producing any significant help either. He said it could make it easier for Bob to eat for a while, but that it would also make him very uncomfortable and while he was getting it, sore and unable to take in anything other than liquids. We have an appointment with the radiation doctor tomorrow to get his opinion. After that we'll make a decision about how to proceed.

I also have a bad Walter update. Just about an hour ago, he seemed to have what might be another stroke. He dropped to the floor and didn't move, and hasn't moved since. I have him resting comfortably in his bed. He's still breathing, but my gut instinct says he won't recover from this.

Thank you so much for all the kind wishes everyone, I wish I had better news to report.

Carol

The Cat Scan, not results

Hi,

Just wanted to update on how the cat scan process went. You might remember that I said I wanted to stay with Bob when he had it done. Well, when the technician came to take us back for the procedure, I looked at him and said "I'd like to come with him." He looked like he started to say something else, then had a look at my face, and said, "OK." I think I must have a had an "I'm asking, but I'm not taking No for an answer" look. He even gave me a lead vest so that I could stay while the scan was occurring. So, I thought that was pretty nice. I was glad I was able to stay too. I don't know about Bob, but it made me feel a lot better to be able to stay right with him.

Walter is hanging in there. He wants to eat all the time, which must be a good sign.

I'll update again when we get the results on Wednesday.

Carol

The latest oncologist update

Yesterday Bob had an appointment with Dr. Posada, the oncologist, for his monthly check up. First Bob has lost more weight. He lost 10 pounds in the past month. That's a total of almost 50 pounds since this started. He weighs 156 right now. It's hard to maintain your weight when you're fighting cancer, but the doctors stress how important it is.

When we talked to the doctor we told him that Bob has been more tired this past month than the one before. Before he heard that and considered the additional weight loss, he was going to schedule another round of chemo. He feels that now we should go ahead and get a cat scan to see what's going on. He is afraid that because of the fatigue and weight loss that the chemo drugs may have stopped working.

So, we have an appointment to get a cat scan tomorrow at 11am, and then we will go see Dr. Posada for the results of that next Wednesday at 4pm. If the tumor hasn't decreased or has grown, the doctor will change the chemo drugs he has been using. He warned us that sometimes when you have to change them, the effectiveness gets progressivly less each time. So, naturally, feel free to send us good cat scan thoughts.

I'm going to try to get them to let me stay with him during the cat scan tomorrow. The small spaces freak him out. Plus, the last time I sent him back for a test alone, somebody almost jammed a needle straight through his vein. They might not let me, but they'll hear about it if so.

I'm also going to try extra hard to make sure Bob has a good meal for every meal. He's been trying too, but there have been times when he's just had yogurt for lunch. So, I'm going to see if I can make sure he has something decent to eat all the time.

For those of you following my Walter saga, he's not doing too well I'm afraid. He's not tinkling on the bed right now, and the tinkling situation is down to a managable level, but he's not doing well otherwise. He's weak; sometimes he has trouble standing or walking. His back legs seem stiff and weak. He follows us around the house and just stares at us. It's like he doesn't know what else to do. We had a scare with him last week. He was lying on his bed in the floor and was not moving and didn't move when I touched him. He felt stiff even. I was afraid that was it that night. But a little while later he followed me into the kitchen to eat. Now I'm wondering if it's possible if he had a little stroke or something. Well anyway, in spite of all that he is still eating good and enjoying being petted, so we're taking it one day at a time. We're doing a lot of that around our house right now.

Carol

End of September Update

Hi,

There hasn't been too much new going on so I haven't updated in a couple of weeks. Basically things are about the same as they were the last time I posted. Bob's vocal cords are apparently still paralyzed because he continues to have trouble talking. I was hoping that the condition would clear up. It still could I think, but of course there is the possibility that it will not at this point since it's been so long.

Bob seems extra tired this week. The chemo sessions this Monday was especially long and tiring. We arrived at 8:45am and didn't leave until 5:15pm. They get longer every week. They tacked an extra hour on about two months ago. They were giving him one of the two chemo medicines over an hour's time, but there was some blood level they were not happy with so they decided to stretch it over two hours which has helped I guess because we haven't heard anything more about it. But in addition to that it just goes longer every time for reasons known and unknown.

This week we had a lot of trouble with the pump that controls the rate at which the stuff goes into Bob. If you don't know what I'm talking about, the pump is the little square machine that hangs off of the rolling IV stand. Just for visual purposes, it's about the size of a small car battery. They seem to be very persnickety and stop working frequently. This is common. But the one this week kept breaking down every 15 minutes. They finally replaced it and then that one did they same thing and then they replaced that one. When they stop working, the machine starts beeping, or dinging really, (it makes a ding, ding, dong noise to be exact, I've heard it enough). And every time that happens the nurses have to come over and fix it. The machine displays a variety of messages, no flow above pump, no flow below pump, air in cassette, fix me before I explode, stuff like that. So anyway, towards the end of the day the nurses were starting to look exasperated with it. I sort of wonder if part of the problem might have been that the IV was not inserted very well that day. Just a hunch. The nurses are all super super nice, but some of them do seem to be better about starting an IV than others.

Anyway, needless to say that all made for a very tiring day, and like I said, extra long. And Bob has been super tired ever since. Of course just getting chemo is very tiring in itself, so possibly it is just a combination of things.

Other than that we were very happy to see our old friend Dave this week. He came up Monday from Brownsville and stayed a couple of days with us. It was great to be able to visit with him and I know Bob appreciated it very much.

That's about all from Castle Tureaud. Later.

Carol

The Latest Scary Thing

Well, this has been a tough week around Tureaud Mansion. This is a long story, so bear with me.

On Friday we had an appointment with the oncologist. That went fine, but right after that Bob started coughing and wheezing as he draws in air. It had started a little bit the night before but he wasn't doing it when we saw Dr. Posada, so he couldn't tell us anything about it. Anyway, Friday night this situation got much worse very quickly. Bob started having trouble talking, he was coughing hard, having more difficulty than usual breathing and making huge wheezing sounds.

So, Monday I decided to call one of his doctors to have a look at him. Before I could, however, his pulmonologist's office called us to schedule a follow up appointment. So while I had his office worker on the phone I told her what was happening. She talked to Dr. DeKeretry, who told her to have us come in the next day, Tuesday.

Dr. DeKeratry did a broncoscopy, which requires that Bob be sedated and then the doctor puts a camera down his trachea. When the Dr. came out to talk to me after the procedure he told me that Bob's vocal cords were paralyzed. He went on to say that this was bad news, that in his opinion this could mean that the tumor was getting much worse and causing it, or that the tumor was now pressing on a nerve and causing it, or that the chemo has caused it. But whatever the cause, he said it was a bad situation and a sign of worse things to come. He said there was a good possibility he could aspirate, which means food or water could go into his trachea, and this could be very dangerous. In other words he was very fatalistic. He was very depressing quite actually.

Anyway, we left feeling pretty down. It was a long day, all that plus driving time took about 5-6 hours. When we got home though, I decided to look up this newest thing on the Internet to see what I could find out. I try to stay on top of everything. Anyway, I read 4-5 articles and one of them mentioned that paralyzed vocal cords could be caused by using inhaled corticosteroids, or an asthma inhaler. Well, about three weeks ago, Dr. DeKeretry had put Bob on Advair, which is, you guessed it, a corticosteroid inhaler.

Reading that gave me some hope, maybe it wasn't the tumor getting worse like the Dr. had said. I let Bob know and we both slept a little bit easier. I slept on it and in the morning decided to make an appointment with Bob's ear, nose and throat Dr. All the articles I had read on the internet said you should see an otolaryngologist for this condition. That makes sense to me, since the vocal cords are in the throat area, not the lungs. So I called this morning and was able to get him in this afternoon with Dr. Martin the otolaryngologist. Bob was very tired but went along with my plan.

Seeing Dr. Martin made us both feel a lot better. He put a small scope down Bob's nose to get a look at the cords. He did say that they were not moving, that they were stuck in the mostly closed position. I asked him about my research, and he kind of rolled his eyes a little, you know how doctors hate it when you go on the internet, but I don't care. He said it was possible that it was the same things that Dr. DeKetetry said it was, but he also said that what I found was also a possibility. He said he had heard of that before, but had never had a case himself where that had happened. He did say that it didn't seem likely that the tumor was pressing on a nerve, because both vocal cords were affected and for it to be the nerve causing it, the tumor would had to have started pressing on the nerve on both sides of trachea at the same time, which would be unusual. If it was just one vocal cord, this would be more of a possibility.

The best thing he said was that if it was the inhaler, that this condition would improve on it's on in a few days. So I am keeping my fingers crossed that this happens. It's frustrating for Bob to have so much difficulty talking, and it's making him tired, having so much trouble getting in enough air. Dr. Martin said it is hard to draw air when he is trying to take in a big breath like you need for talking or when he is coughing, but when he is just sitting quietly, not coughing, not talking, or sleeping, his air flows easily. I had already noticed that when he was sleeping he wasn't having any problems. I was wondering why that was too.

And, he also answered a question we have been trying to find an answer to forever. Why Bob continues to cough so much. I don't exactly know how to explain it, but he said that the chemo has made the lining of Bob's lungs not function as well. So, he has more mucous to clear, and it's just not working right. Like I said, I can't explain it too well, but I seemed to know what he was talking about in his office. Anyway, like I said, we've been trying to get someone to figure out why he was coughing for forever now. He recommended that during the day we not give Bob any type of cough medicine so that he coughs up what he needs to, and then at night give him the cough suppressant so that he can sleep.

Sorry, that last part was a bit graphic. That's the long and the short of it. We are both tired and still stressed, but hopeful. Please send good thoughts our way that this clears up in a few days like we are hoping.

On another note, Walter is up to his old habits and we are back to sleeping in our guest room. Ergh! I'm back to considering doggy diapers.

Throat Doc Update

Hi,

I wanted to post an update about going to see the throat doctor. We were hoping to get in to see him to see if he could take off this obstruction from Bob's trachea and possibly stop his cough. The doctor called us last Friday and told us he was going to try to squeeze us in on Monday.

We did get in to see him last Monday. We weren't sure if we even had an appointment when we got to the clinic for chemo Monday morning, but when we asked they told us we had one scheduled for that afternoon at 1pm. This necesitated some schedule finagling on everyone's part because we don't usually get out of chemo till 2 or 3 in the afternoon. So we got our chemo nurse to call the doc's office and let them know we might be a little late. Turns out you can walk around the hospital with a saline bag attached, but not a chemo bag. They seem to think that it would be pretty bad if there was a leak and people were exposed to those chemicals. Tells you something about the nature of these chemicals, huh?

Anyway, we got through with the chemo right before 2pm and headed up, saline bag attached, to our appointment with Dr. DeKeretry. We were told you pronounce his name like "duh carrot tree." Isn't that cool? We were expecting that this would be a consult because no one told us that we would have a procedure. But when we got there they moved us into the procedure room, and started to prep Bob. So, turns out the doc had made an appointment to go ahead and take a look down his throat. Or a bronchoscopy, as it's called.

So when the doc comes in he started scaring us with living will stuff, which they do for any procedure, but he had this look on his face that kind of scared me. The plan was that if this obstruction was bad enough in the trachea he would remove it or shave it down. So apparently that could be somewhat dangerous. Anyway, after we freaked, the procedure got underway. Afterward, the doc came out to talk to me about 45 minutes later and told me that although everything had went fine that the obstruction was only about 20%, not what he considered bad enough to cut off, so he left it.

So that was good and bad news. Although it was a relief not to have to worry about the possible side effects of cutting on his trachea, it was disappointing because we were hoping that if he removed it, Bob's coughing would go away and he could get off the cough syrup. He did however, prescribe an inhaler with a steroid because he said his trachea was irritated. So we're still waiting to see if that will help any. Tonight his cough sounds just the same to me. It's still better on the codeine, but it's still there.

So that's the long and short of it. Chemo tomorrow, then a week off and a visit with the oncologist.

I'll update later.

Carol

Middle of August Update

Hello,

Things are going pretty well for us. Bob started back on the chemo as planned last Monday. We go for session two in this round tomorrow. Hopefully we will be able to get in to see the throat specialist tomorrow afternoon. He phoned us Friday and said that he would try to work it out. We don't have confirmation of that yet though. Anyhow, if we get in, I'll send an update about that. Bob is still coughing as of now, but the cough syrup does help quite a bit. With it he just coughs. Without it he coughs his head off. By the way, yes, I did say that an actual doctor phoned us at home. How awesome is that? That's the third time we've had a Scott and White doc call us himself. I think that's pretty cool and uncommon.

An update about Walter the incontinent dog. I took him to the vet Monday before last and he said that he has lost some muscle control in his bladder. The good news is that it was treatable. He gave him what amounts to doggie Sudephed which has the added benefit of controlling leakage. So, although Walter will never be completely housetrained I'm afraid, he is not leaking anywhere now, which means that we have't had to jump up and change the sheets in the middle of the night in two weeks. And that's a big Yea!

Later,

Carol

Good news from the Cat Scan

Well we finally got some good news for a change today. We just got back from the oncologist. The Cat Scan shows that there has been a significant reduction in the size of the tumor. The doctor thought it had shrunk about 50%. So this is great. The doc even said that he had been afraid that it had grown because of Bob's cough, so he was very pleasantly surprised to see these results. We were very relieved. We didn't really talk about it until after the appointment, but we both had prepared ourselves for bad news.

So this means that Bob does not have to start rediation and can go back on chemo. The scan did show a small growth into Bob's trachea. The doctor didn't seem to think this was a growth in the tumor however, just a little nodule. He also said that this could be the source of all the coughing. So, next week we are going to go see the trachea doctor and talk to him about having that removed. We are hoping that maybe the cough might go away if so. That would be such a huge relief to Bob. So we really got lots of good news today.

Then the week after next we'll start back chemo on the 13th, Bob's birhtday. Not the best way to spend a birthday, but right now, it sounds just fine.

The week in review

Well, we've had a pretty busy week around here. Monday, Bob had his 9th round of chemo and that went just fine. On Wednesday we first trekked over to the Taylor clinic for blood work, only to find out it was supposed to be fasting blood work, and as I had given Bob a bagel that morning, had to reschedule for Thursday. Wednesday afternoon we saw the oncologist, Dr. Posada, more on that in a minute. Then Thursday we trotted back over to the Taylor clinic for the, now fasting, blood work. By the time Friday rolled around, we were both so tired, we pretty much stayed in bed all day.

So, back to the oncologist. We told Dr. P. how much this cough has been bothering Bob and that seemed to trigger him to suggest radiation. You might remember that when we first started on this journey, about three months ago now, we were told that Bob should not have the radiation at that time because it might erode the tumor too fast and leave a fistula, which would be very bad. But the doc seems to think that enough time has passed and that this isn't a concern anymore. So, Monday, tomorrow, Bob is going to have a cat scan to see how things are looking right now and then we'll determine if this is a good time for radiation. I guess it depends on if he can physically handle it and if it looks like his treatment needs to progress in that direction. Apparently the chemo is good, but so slow moving that at a certain point you have to step treatment up a notch.

I have some concerns about the radiation though. We have heard some real horror stories about how people seemed to be handling chemo just fine, like Bob is, and then start radiation and go downhill rapidly. I am very afraid of the treatment being worse than the disease. So, fears aside though, we will have to wait until we have the results of the cat scan before we know what will happen. We see Dr. Posada again next Friday for the results, so we should know more then.

One good note about the coughing - we talked to a nurse who visited with us in the chemo clinic Monday and she called in a prescription for cough syrup with codeine. This ACTUALLY seems to be working. AT LAST! I wish they had done that a month ago. Anyway, no bitterness, we're just relieved something is working. Bob is a lot more knocked out now, of course, with the codeine in his system, but the coughing is so much better. So for now, it's worth it to him.

A brief shout out to my cousin Jay who starts state trooper boot camp today in Tennessee. Good luck Jay, I know you'll do great!

I'll update when something else interesting comes up.

Carol

The Very Long Chemo Day

Hello,

First of all, yes I titled this after reading a piece about Eric Carle. And if you don't have kids or read kids book's, Eric Carle is a picture book author and illustrator and he wrote, amongst other things, The Very Hungry Caterpillar. Very cool piece about him on NPR.

Anyway, Monday was indeed a very long day for us. When we got to the clinic they told us that Bob would only be getting one of his two regular chemo drugs. They said that one of his liver function levels, his bilirubin (no idea if that is spelled correctly) was elevated and that the doctor had decided that they would hold on his Taxol, which is the drug made from the Yew tree for those of you who remember the first post.

So, they went ahead and gave him the other drug. I asked to talk to someone in our doctor's office about this elevated level and what this might mean, so the nurse in the clinic went on a long search to get us in touch with someone. Turns out, our doctor's regular nurse wasn't in that day. So they tracked down the nurse filling in, and she came to talk to us. She said that our doctor was not the one who had ordered the hold, that another doctor who runs the clinic had done that because of the elevated level, but that our doctor thought it was fine to go ahead with the Taxol.

So, by this time it was already afternoon and Bob had received all the meds except for the Taxol and the clinic nurse was just getting ready to take out his IV. But the doctor wanted him go ahead and get the Taxol, so we stayed about another hour and a half. By the way, the original doctor had done the right thing it seems, but Bob's doctor just knows his case better and felt it would be fine to go ahead with the medicine. So, it just turned out to be an extra long chemo day for us.

A Walter update, though I run the risk of this becoming the How's Bob & Walter page. He's still tinkling everywhere, and it's making me nuts. I had to change the sheets two night in a row, and right before we went to bed both times. It's sort of the straw breaking my back right now. I need to get him to the vet, but it's a challenge to find the time to do that right now.

Coughing update: This week I tried a couple more things. I thought maybe a cough syrup that was only a cough suppressant and not an expectorant might help, so I bought that kind of Robitussin. Seemed to help for about two hours, but then right back to the same. So, I thought maybe he just needs something to dry everything up, so the pharmacist recommended an antihistamine, so I got Alavert, a non-drowsy one. This just didn't seem to do anything at all. So I'll try Mikki's suggestion of hoarhound drops and ginger tea next.

K, that's all for now.

Carol

Tired Week

Bob had chemo on Monday and everything went fine with that. Since then he has been a little extra tired all week. This is normal for the days following a chemo treatment, but he's a bit more tired this week than usual. So he's just been taking it pretty easy mostly.

Today he had to get blood drawn at the Taylor clinic which he has to do every week while on chemo. They have to check all of his levels to make sure he is tolerating the medicine ok. So far so good. After that we ordered a new pair of glasses for him at Walmart. He lost his on the way to the chemo clinic a few weeks ago. He has a funky spare pair he's been using, but it'll be good to have a nice new pair for him. No big loss on the old pair. He had actually just gone to the eye doctor and he needed a change in his prescription anyway.

The cough still lingers. I'm still trying different stuff. I bought some Robitussin CF today, recommended by my Dad. We'll see if that makes any difference. So far, 2 hours after he took it, it doesn't seem to have made any impact. I still have at least one more thing to try after this.

Walter update, he hasn't tinkled on the floor quite as much the last few days, but I'm almost afraid to say that. We wanted to take him to the vet today, but he didn't have any open appointments. It'll have to wait till next week. It seems like Walter can't control this some of the time. I've seen him walking and tinkling, and it doesn't even seem like he's aware of it. Well, anyway, that's the update on that.

More later.

Carol

Well, so far I can't title this post. The bar won't let me click the cursor in there. Not that it has to have a title. Well, I was going to title it, "just catching up." So there, that'll have to do.

Ok, so we've had a pretty quiet week. This was the week off from chemo and it was nice for letting Bob rest and letting me catch up on a few things. First things, Bob is doing pretty good. His energy level is good. He even made us a delicious omelet for breakfast this morning. Yum! He's also been spending a lot of time working on his model trains. He been buying some paint lately and starting working on several of his engines this week.

The cough still lingers. I guess it's just something he's going to have to deal with. Nothing seems to make it go away. We have tried so many things at this point. Sudephed, Benedryl, many of the over the counter cough suppressants, Elderberry, peppermints (we read peppermint oil was good for cough. Or one of you told me that, can't remember now), lifesavers, cough drops, oh gosh, just lots of stuff. I guess he just needs to cough. The docs all keep saying well it's really good, better than not being able to cough. So, hmm, there you go.

For me, I was able to get our dogs to the vet this week. They needed shots, tests, food, flea meds, heartworm prevention, everything. Woof! Then a couple of days later they got a nice bath, a toenail trimming and a lovely flea dip at For Paws Only, a little Taylor place. They smelled beautiful for at least 24 hours. It was nice to get all that taken care of.

On a pet note, Walter has been tinkling in the house lately. A LOT. He's older, about 12. I don't know if this is just something he's decided is a great idea, or if he's gotten senile. He's had a few house training issues before, but nothing like this. Either way, it's not helping my stress level right now.

So, that's the Tureaud update. Thanks for everything, I've had some mighty delicious food lately!!

Chemo tomorrow. I'll update later,

Carol

Appointment with oncologist

Friday we saw the oncologist, Dr. Posada. He's seems like such a nice man. He gives us plenty of time and treats us with respect. Anyway, he seems very happy with how Bob has been improving and, as I thought, ordered another round of chemo. This is really good, because when we first started this, there was always the possibility that the chemo wouldn't help at all, and we wouldn't do more than one round. But so far so good, and so we'll keep it up.

Bob had gained 5 pounds. I thought it was 8, but that was on two different scales. This increase is on the same scale, so it is truly 5 pounds. But that's still really good.

Bob has been getting blood work every week and Dr. Posada talked to us about how his levels are all good. His nutrition level is normal, as is everything else. His red blood cells and everything are fine. So that's all good too.

Today we are both having a tired kind of weekend. I took Saturday night off work, and slept all night and have been laying around in bed all day. I feel kind of bad for not taking care of more stuff, but also, am realistic that if my body says you're tired, stay in bed, I probably should.

Bob has been coughing a lot today which wears him out. We have talked to all the doctors about it and they all don't know of anything else that will help other than what we are currently doing, which is giving him Sudaphed every 4-5 hours. They all also say that it's good he can cough, that they really worry when people lose the ability to cough because that can lead to pneumonia.

A word about the Sudaphed too. You know these days you have to show your driver's license and sign and almost get fingerprinted to buy it. Every time I pick it up at the pharmacy, I am the only one who has bought it. I can tell because it's just a line of my signature down the book I have to sign. And I'm talking about over a period of weeks. I feel like it's only a matter of time before the sheriff's department shows up at my house looking for a meth lab.

Later, :-)

appointment with the nutritionist

Wednesday we had an appointment with the nutritionist and one of the gastro doctors. Everything went really well. They had originally scheduled those appointments because for a short time Bob had a feeding tube down his nose to his stomach. But that came out after only a week when they put the stint in his throat. But also, since this is a cancer of the gastric system, they wanted to follow up as well. Bob was having a lot of trouble eating at first, and had lost around 35 pounds.

So at yesterday's appointment everything was greatly improved though. Bob has gained 8 pounds, and we were really glad for that. One of the most important things for someone who is undergoing chemo to do is to get proper nutrition and keep their weight up. When he had dropped the 35 pounds, I was getting very worried. Now that he's headed the other way, I feel a lot better.

They were also happy that he has been eating so well. They even told us that we don't have to schedule another appointment with them unless something changes or we want to. So that's at least one doctor we don't have to see for awhile. Anyway, we were really happy that there have been some improvements.

Tomorrow we see the oncologist for a checkup. I'll try to post tomorrow sometime about how that went.

Later, Carol

Chemo day 6

Bob had his sixth chemo treatment today, and everything went fine. It's kind of hard to figure out what to give him to eat on chemo days. I make a nice breakfast for him before we go. But while there he just doesn't want to eat anything heavy. I think the hospital setting makes him lose his appetite. He'll eat yogurt or breakfast bars, but nothing really filling. But the bad thing is that by the time we get home he is ravenous and I can tell his blood sugar is low. This was the case today and I made him a nice big meal when we got home, but he was really tired and feeling rough by that time. I would like to think of something to give him at the hospital that would be more filling, but not so heavy that it bothers him, but so far we can't seem to figure out what that would be. He seems to feel even a sandwich would be too much. So, I'm open to suggestions.

We see the nutritionist on Wednesday, although we expect her to just look at him and go "OK, great, see you next month." On Friday we see the Oncologist, Dr. Posada. We will decide then how we will proceed with treatment. I expect him to give Bob the week off and then resume the chemo.

So anyway, this is a super busy week for us, but like I said, next week we should have the week off.

By the way, thanks so very much for all the sweet comments. It is so comforting to have such supportive friends. You really are such special people.

Carol

Letting the world know stuff

Hi Everyone,

I've been talking about starting a blog to let those that care about Bob and myself know what is happening with his health. So I've finally begun work on it. I'll try to update it at least every few days or as we learn important things.

The current situation so far is this: As most of you reading this blog know, Bob was diagnosed with stage 4 esophageal cancer. The cancer had also spread to his trachea and his vetebra right behind there. Because of the involvement of his trachea, surgery was not an option for him. You can replace an esophagus, but there is not currently a replacement for a trachea. Also, radiation was not an option for us when treatment started. Again, because of the involvement of the trachea, the doctors were afraid that if they shrunk the tumor too fast, as radiation might do, that it might leave a hole in his trachea where the tumor had been. This would have been a very dangerous and life threatening emergency.

So at present the treatment Bob is undergoing is chemotherapy. For those of you inclined to be curious, specifically, Taxol and Cisplatin. Taxol is derived from the bark of the Yew tree and Cisplatin is a heavy metal. So far the chemo is going very well. He has been tolerated it well, with few side effects. Sometimes his stomach is a little bit upset that day, but he has had none of the bad nausea you hear about. There are a couple of smaller issues. He is losing his hair. It's not falling out in clumps or anything, just getting very thin. And, his hands are very cold a lot of the time. We have been doing the chemo every Monday and it takes about 5 hours to administer.

Bob is defintely feeling better than when this all started. When he was first diagnosed, he could only swallow liquids because his esophagus had gotten so narrow. When he was in the hospital for the week in May they put a stint in his throat that helped to open it up. We also suspect that the chemo has shrunk the tumor some as well, because now is able to eat just about anything he wants. When he couldn't swallow he had almost totally lost his appetite. Now he eats as much as he ever did. Though he is still very tired, he has more energy than before. And also, he had developed a pain in his upper back in the spot where the tumor had spread to, but now that pain is gone. He still has a cough, but that is also somewhat better than before.

So, we have along way to go, but right now we are happy with the improvements. I'm thankful that he is enjoying eating again, and is feeling better. That's where we are up to the minute.

Tomorrow we go for the 6th session of chemo, which is the last in the second series. We will see the oncologist on Friday and decide where we go from there. My feeling is that he will order another round of chemo since it seems to be helping and Bob is tolerating it so well. I'll let you know when we know.

And let me say to everyone reading this, Bob and I are both so thankful for all of you concern, love, good wishes and kind words. It makes us feel so much better to know there are people out there who care about us. Right back at you.

Carol