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SOVTWALKER's Photo SOVTWALKER Posts: 15,370
11/2/15 6:33 A

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Wanda I am sorry to hear about your father-in-law. I hope he is not in pain at least and that the end is peaceful for all of you. It is difficult I'm sure but I am sure everyone is glad that you are able to be there with him. emoticon

I think hubby's infection was just a skin infection and it does seem to be better. He still has the digestive issues but I think we are closer to having an answer on those. Last week he went in for a barium scan of the small bowel and they found there is some narrowing in his small intestine. They say the barium usually gets out of the stomach and into the intestine within 15 minutes and gets through the small intestine within 30 minutes - 2 hours (although it can take up to 4 hours), but after 4 1/2 hours he still had some of it in his stomach and none had passed through his small intestine to his colon. I don't think they know for sure what is causing the narrowing, but he will need surgery at some point to correct it. It could be scar tissue from the first surgery or damage from the radiation, although it seems like he was having problems before he even had the radiation. In any case the plan is to go in through the original incision and do some "re-plumbing" to make sure everything is opened back up as it should be. The surgeon says it should be about a 3 hour surgery and he will likely be in the hospital for 3 or 4 days. When it will be done it still to be determined. He is in the middle of his chemo so the surgeon was going to send a note to the oncologist about the finding and hubby will see her tomorrow and discuss it. If she feels postponing the chemo will reduce its effectiveness they will likely try to hold off on surgery until after the chemo is done. If she doesn't think it will matter he may have the surgery soon. At this point he doesn't have a complete blockage so it is not life-threatening, just uncomfortable for him. His road to recovery has certainly been rough, but it should improve eventually- and we know there are lots of people who are worse off than he is, so we are thankful that he is doing reasonably well.

I am not doing well with my weight. We didn't have a meeting this week because our meeting place was being used for a craft show, but I have had three gains in a row (and skipped the meeting one week). Fortunately they totaled just under two pounds but that was two pounds in the WRONG direction. I have not been careful about what I eat lately either! I am finding it difficult to focus on that right now. At least I am getting some walking in at least on the days that I work or it would probably be worse. I am planning to get back into using my exercise bike in the evenings and on weekends too, but it hasn't happened yet.

I hope everyone has a good week (or as good as it can be under the circumstances).

Bev

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LIVINTODAY's Photo LIVINTODAY Posts: 9,300
11/1/15 9:25 P

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Hi everyone,
Last week was difficult and this one will be also as my father-in-law is on end of life care. We made a mad dash to get here last Wednesday. Got the call and hit the road at 10:30pm Tuesday and drove 800 miles just stopping for gas and bathrooms. We were afraid he would pass before we could get here. Now we have been here for 5 days and his condition has not changed but we are happy to be here and able to do our part.

Bev, I hope antibiotics will take care of your husband's infection and also that the infection in his system is what is causing the digestive issues. It is so hard to watch someone we love suffer.

Thanks for saying such sweet things about me and my Captain America shirt, Sunny! I guess our little Elena had her first lesson in speaking up for herself and being her own person! I hope she will always be strong and independent.

I'm not posting as often as I would like...there is just too much going on right now but I should be able to be back on track in a week or two. Speaking of "back on track", I really need to get back on track with my eating also. These long days at the hospital are hard as both of you know. I'm trying to make the best choices I can but sometimes there is no really good choice.


Wanda

Believe in Miracles.
Forgive Everyone.
Life is not fair, but it is good.

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SUNNYSIDE's Photo SUNNYSIDE Posts: 2,862
10/21/15 9:13 A

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Good Morning Friends,

Well, I learn something every day! I did not realize our El Nino would have an effect on parts of the country back east! It is rather amazing when you think about it. It was raining so hard out here yesterday that we were not able to get in for Ray's radiation treatment. We live way north and there are a lot of washes that get flash floods running through when we get a hard rain. Had to call the Dr.'s office to let him know we were stranded. Hopefully today it will be better, but they are predicting more rain. Yesterday we even had a back yard full of hail which is pretty exciting for us to see also! :)

Bev, I'm sorry to hear about the problems your husband is still having with his digestion and also the worry about infection. Ray is also still fighting the nausea and upset stomach. It is so hard for him to eat which is a real worry with his weight already so low! Monday when we went to his cardiologist he took him off another of his heart meds because his blood pressure now is way too low and the Dr. was concerned about that. I'm hoping that he will have some improvement with one less drug to be taking. He just wanted to sleep all day yesterday and also is sleeping in his chair instead of coming to bed which is a worry to me, but he says he can sleep in his chair better and helps with the coughing, so I guess he knows his body best and what he can do to help himself through the rough patches.

What a cute idea, Wanda about getting that Captain America shirt and posting it for your little granddaughter to see! Whoever told her that was for boys sure needs to rethink that idea! I think he is for all the kids that is for sure and what a nice grandma to let her know!! emoticon I know what you are saying about grandkids! They are pretty great. I've got 8 grandkids and 3 great grandkids who are pretty terrific also! I never imagined the family would get so big! Ha Ha Wish I could say they were all here in AZ, but my son and his family are in Georgia and one granddaughter and family are in California!

Well, I'd better sign off. I woke up again about 3:30 a.m. I have no idea why my clock is so crazy right now, but no use staying in bed just thinking!

Take care and I'll be hoping for a mild winter for both of you!!

Hugs,
Sunny

The Lord is my strength and my song.

-Exodus 15:2


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SOVTWALKER's Photo SOVTWALKER Posts: 15,370
10/21/15 6:49 A

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I have seen a couple of different predictions for us for the winter. The Farmers Almanac says we are in for a winter like last year with lots of snow and cold temps, but I saw last week that NOAA's prediction is for a milder than normal winter in Vermont due to El Nino. That one didn't mention anything about snow so I don't know what they are saying about that. Milder than usual sounds good to me!

Hubby had his second infusion of cycle two yesterday and so far he is doing okay with it. I think I have seen that a lot of people said it got worse after the first two so we will see how he feels in a couple of weeks when he starts cycle 3. He had to start taking an antibiotic last night because there is a section on his incision scar that looked like it was infected. It got red a few weeks ago but then it looked like it was clearing up but it came back last week. We assumed the redness was related to the chemo since it got better on his week off and came back when he started chemo again, but the doctor told him yesterday it looked like an infection. He also has an appointment next week to go for a procedure to try to find out why he is still having so many digestive problems. He will have to drink a liquid with barium in it and then they will do a series of x-rays to see his intestines. Hopefully it will be nothing much but that they find something they can treat so he will start to feel better. Sunny, I hope Ray is doing well and best wishes to your husband as well Wanda.

Bev

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LIVINTODAY's Photo LIVINTODAY Posts: 9,300
10/20/15 10:52 A

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Hi everyone!
We are having another nice Ohio day! We turned the space heater on in the family room just to take off the morning chill but the temps will get into the 70's. That makes us smile; we would like a nice long fall before winter sets in. We are supposed to have a mild winter according to today's paper. I guess that when there is a big El Nino this area gets a milder winter. We'll see! I know a lot of people are dreading a winter like last year.

Sunny, if I could do my Christmas decorating now without setting tongues wagging, I probably would! Instead I'll have to content myself with reading Christmas stories and mentally planning my shopping. Haven't started making any lists yet.

My little Elena, our 3 year old granddaughter who lives on Long Island, is a great fan of Captain America! She had a Captain America shirt on when they took pictures at a pumpkin farm last week and she was upset that her aunt told her she couldn't wear it because "Captain America" is for boys. Because of that she decided she needed to be a princess for Halloween. Well I found myself a Captain America sweatshirt and wore it out to breakfast and had the waitress take a picture on my phone. Then I sent the photo to her just saying, "Captain America out for breakfast in Dayton, Ohio". I hope that sends a message to her that she can like what she likes! She did think the picture was pretty funny....she said, "That is NOT Captain America, that's GRANDMA!!" My goodness, how I love that child!

Grandchildren are a wonderful gift, we have two others, Corey is 21 and Kelsey is 20. They both live nearby!

Glad your husband is feeling a bit better, Sunny! Hope your hub is doing better also, Bev!
Our days with spouses are special and we want as many as we can get.




Wanda

Believe in Miracles.
Forgive Everyone.
Life is not fair, but it is good.

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SUNNYSIDE's Photo SUNNYSIDE Posts: 2,862
10/20/15 9:40 A

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HI Bev & Wanda,

Well golly, Bev, it sounds like old man winter is wanting to strike pretty early this year! I was hearing on the news where New York had a blizzard already and I know you guys are not far from New York, so you were sure to feel some of it! Hopefully it will be short lived and you will get a little more nice weather before the really frigid temps start coming.

I had to laugh Wanda that I thought you had your trees up already! I guess that would be rushing things just a bit, but us Christmas lovers always want an early jump so we can enjoy it longer. emoticon Looks like we may be having a wetter than usual winter because of the El Ninio which they are predicting is going to make things wet. Since there has been such a draught it will be appreciated by everyone. (Maybe not so much by our winter snow birds though). I hope California will get a lot of it as well.

Wanda, my first husband was in the Air Force also and I just loved it! We spent 4 years in Wiesbaden, Germany where my first 2 kids were born. It was a great time that I remember back on with lots of good memories! Dayton has a really big AF base. My husband had some of his photographs hung up down there and he was pretty proud of that. He was a photographer while he was in.

I agree that with the computers, smart phones, etc., etc. it has made it much easier to keep in touch with our relatives who are far away from us. That is great that you are in close touch with your sister. Sisters are really special.

My hubby was feeling a little better yesterday. He has gone over one week now without chemo and is starting to feel a little better again. We also went to his cardiologist yesterday and he was taken off another one of his medications because his blood pressure has been too low. I'm hoping that getting off of that one is going to help him feel stronger also. We can only hope and take it one day at a time.

Everyone have a great week and keep on keeping on. Looks like I lost about a pound this last week, so glad to see it at least start moving in the right direction!

Hugs,
Sunny

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The Lord is my strength and my song.

-Exodus 15:2


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SOVTWALKER's Photo SOVTWALKER Posts: 15,370
10/19/15 7:13 P

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It was downright wintry here over the weekend. We even saw some snow in the air, although it didn't stick where I love. I saw pictures from various locations around Vermont that had snow on the ground but we didn't get anything more than some brief squalls here. It was pretty cold though. I am not ready for this!

Bev

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LIVINTODAY's Photo LIVINTODAY Posts: 9,300
10/19/15 4:46 P

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OOOPS!! I have to tell you that those are last year's trees. I do put mine up early but not quite this early. i usually get them up the day after Thanksgiving.

Sunny - Well, Hi, fellow Ohioan! We are an Air Force family and have lived in 7 states and Puerto Rico but Ohio is where we retired. We live in Beavercreek which is a suburb southeast of Dayton. We have been here for nearly 30 years now so it really has become home to us. We love the seasons too but come January I would rather be in Arizona!!

I'm sorry you lost your sister; that is hard. I love my sis so much and rarely see her because she is in North Dakota but we keep in touch often by phone and computer. I'm so glad calls aren't as expensive as they used to be and e-mail and just made it so easy to share jokes, photos, and recipes. There are certainly some good things about the modern age.

Have a great week everyone! Today is just Monday so we have six more days to make it as good as possible!
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Edited by: LIVINTODAY at: 10/19/2015 (19:48)
Wanda

Believe in Miracles.
Forgive Everyone.
Life is not fair, but it is good.

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SUNNYSIDE's Photo SUNNYSIDE Posts: 2,862
10/16/15 10:58 A

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Wow, those are beautiful trees, Wanda! Congratulations on having them put up already. It is a lot of work, but I love it too and have a hard time controlling myself not to get carried away. We have always had one in our family one and one in the dining room. I'm not sure it I'll get them both up this year or not, but I know I do have to go buy a new one because we finally donated our's to Goodwill last year after the Holiday's! Bev, that sounds like a lovely idea for your railings, but can understand why you stopped with the other things in the way.

Wanda, I did not realize you are an Ohio girl! I was born and raised in Mansfield, O which is about 75 miles south of Cleveland and 75 miles north of Columbus. We moved to AZ when I was 9 years old and have been here ever since although my folks did move back to Ohio after I got married. My dad always missed the changing seasons out here and did not adapt to desert dwelling! We went back and stayed 6 1/2 months last year when my sister passed away and had to sell the old family home and get things cleared out. I enjoyed our stay back there very much even though it was sad circumstances that we were there.

Anyway, you put me in the Christmas spirit!!

Hugs,
Bev

P.S. I found the Bliss Lights on Amazon and got 2 sets for about the cost of one set on QVC. They arrived last week but have not tried them out yet!

The Lord is my strength and my song.

-Exodus 15:2


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SUNNYSIDE's Photo SUNNYSIDE Posts: 2,862
10/16/15 10:57 A

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Wow, those are beautiful trees, Wanda! Congratulations on having them put up already. It is a lot of work, but I love it too and have a hard time controlling myself not to get carried away. We have always had one in our family one and one in the dining room. I'm not sure it I'll get them both up this year or not, but I know I do have to go buy a new one because we finally donated our's to Goodwill last year after the Holiday's! Bev, that sounds like a lovely idea for your railings, but can understand why you stopped with the other things in the way.

Wanda, I did not realize you are an Ohio girl! I was born and raised in Mansfield, O which is about 75 miles south of Cleveland and 75 miles north of Columbus. We moved to AZ when I was 9 years old and have been here ever since although my folks did move back to Ohio after I got married. My dad always missed the changing seasons out here and did not adapt to desert dwelling! We went back and stayed 6 1/2 months last year when my sister passed away and had to sell the old family home and get things cleared out. I enjoyed our stay back there very much even though it was sad circumstances that we were there.

Anyway, you put me in the Christmas spirit!!

Hugs,
Bev

P.S. I found the Bliss Lights on Amazon and got 2 sets for about the cost of one set on QVC. They arrived last week but have not tried them out yet!

The Lord is my strength and my song.

-Exodus 15:2


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SOVTWALKER's Photo SOVTWALKER Posts: 15,370
10/14/15 11:35 A

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Nice Christmas trees Wanda! Do you do real trees or artificial? We did real ones when the kids were younger but now we have an artificial one. We got a good deal on a nice one after Christmas a few years ago. I used to drape fake pine garland with red bows on my porch railings on two sides of the house and wrap the posts with lights but I stopped doing that when we started burning pellets for heat. The bags of pellets are stacked on the porch in front of the railings so I can't get to them easily now. I think I am a bit of a Scrooge because I am going to get rid of some of my Christmas decorations. I am slowly trying to clean out some stuff we don't need.

Bev

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LIVINTODAY's Photo LIVINTODAY Posts: 9,300
10/14/15 10:46 A

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Good Morning from Ohio!

Yes, Sunny, we are into fall here in face the weather man is predicting a freeze here on Saturday night. We will be scrambling to get all the tomatoes picked on Saturday, even if they are green. We will ripen some and I'l make green-tomato salsa and fried green tomatoes. Anyone else have green tomato recipes?

I've seen the Bliss lights on QVC, too. I think they are beautiful and I may just order some too. Unlike some husbands, my hubs has always refused to put up outside lights. I usually put them around the front door and that is about it. I always have two big Christmas trees though...one in the family room and one in the living room. He grumbles about that but I say that I need the family room one because that is where we spend most of our time and the living room one because it is in the window at the front of the house which at least makes our home look festive without the outside lights.


Our living room tree - most of the ornaments have been gifts from friends - a few added each year


Our family room tree - it gets all the family ornaments even the things my kids made in school 40 years ago.

Guess I could have waited a couple more months to post these - I'm a Christmas nut, LOL.

OH Gosh! I have no idea why these load sideways! It happens with photos taken on my phone and makes me crazy! I should remember to take them with my computer. Sorry! Hope no one gets a crick in their neck! They are right side up in my photo file and turning them doesn't affect how they post on Spark.

Edited by: LIVINTODAY at: 10/14/2015 (10:50)
Wanda

Believe in Miracles.
Forgive Everyone.
Life is not fair, but it is good.

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SUNNYSIDE's Photo SUNNYSIDE Posts: 2,862
10/13/15 10:26 A

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Oh boy, sounds like fall is in the air in your location, Wanda! We are getting better here in Arizona as well, but wouldn't you know it, we had to go up over 100 degrees again this week. I think they said tomorrow should be the last we see of the triple digit temps! I'm SO happy about that!

I got into my box of fall decorations as well. I guess it's the kid in me that still has to come out to celebrate the holidays and I love to decorate. I'm even planning ahead for Christmas. I know my hubby won't be able to hang outdoor lights this year, so when I saw an advertisement on the QVC channel for Bliss Lights I could not resist. They look so easy and you just put them in the ground and aim for any area you want to light up and it looks like little firefly lights all over the place. I think I'm gonna love them and the easy part is the best! Getting a little older now, so have to think of ways to simplify.

Best wishes to everyone! Enjoy every minute of every day and live in the moment!
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Sunny


The Lord is my strength and my song.

-Exodus 15:2


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LIVINTODAY's Photo LIVINTODAY Posts: 9,300
10/12/15 11:36 A

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Good morning Tops Pals,
emoticon emoticon We have had a sunny, but windy morning here. It was chilly enough that I had to close the door to the sun porch...that means fall is here! We leave that door open all summer. I've noticed the urge to cook some of my favorite fall things too and I've hung a fall wreath on the front door. I guess I'm "nesting" and getting ready for cooler days. Yesterday I did a pork loin roast with applesauce and apple cider in the crock pot. It tasted so good last night. I pulled 1/2 of it to freeze for future pulled pork sandwiches and we had roast pork, potatoes and veggies for supper.
emoticon I really have the urge to bake but I'm going to try to hold off until November. I just can't have home-baked goodies around all the time without eating too many. Store-bought goodies don't tempt me as much so hubs has them in his snack drawer. I like to bake pumpkin and apple pies and an old cookie recipe that my mother called "ginger creams". The cookies are a soft ginger/molasses cookie with vanilla icing; I never make them without thinking of her. She has been gone over 15 years but there are not many days that I don't think of her still.

Well, off to the store and then I'm doing "domestics" today; I'll try to get a good walk in though and maybe some time with a good book later. Hope you all have a good day.
emoticon Wanda

Wanda

Believe in Miracles.
Forgive Everyone.
Life is not fair, but it is good.

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SUNNYSIDE's Photo SUNNYSIDE Posts: 2,862
10/11/15 10:33 A

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Good Morning Tops Pals,

Finally got a chance to check here and catch up on the posts! I appreciate your input so much Bev & Wanda and the things that you say and suggest I can really relate to during this difficult time. I'm also believing what you said, Bev...............our husbands do have a good chance of surviving this cancer threat. The Dr.'s can do so much more now than they have ever been able to do in the past and there is always hope! I firmly believe that!!

Bernice, it was so good to see you as well, and of course we are sure interested in how you are doing and everything happening in your life right now! No matter what is happening in our lives it is important not to forget about taking care of ourselves and with us gals, we know that the weight issues have to be kept in mind. If we gain too much it only adds to the other stress we have going on and that is not a help! Bev, you have done fantastic at holding your weight through all the stress of your husband being sick. I have not done as well as you have, but I could have done much worse, so I'll try to focus on that. I'm still holding at 175, but at least was not another gain last week.

Well, I'm not sure what will happen to Ray this week. Tomorrow we have to address his Oncologist however because he has become so weak and dizzy. He was not able to hold himself up the other night when he was making a bathroom trip and felt himself going down and just didn't have the strength to prop himself up by holding onto the bed like he has been doing. I'm concerned they are going to find his blood count is not good this week and wondering if they will adjust the strength of the chemo they are giving him or even withhold it altogether for awhile to let his body rest. The Dr. did mention they may have to do that the last time we talked with him. Well, it is a battle, but just have to take it one day at a time!!

Thanks you gals for letting me vent.

Best wishes to you all!!

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Sunny


The Lord is my strength and my song.

-Exodus 15:2


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SOVTWALKER's Photo SOVTWALKER Posts: 15,370
10/10/15 9:28 P

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We would love to chat with you too Bernice! I am sorry if it seems like we haven't included you much. I think it is because Sunny and I have been so focused on our husbands who are going through similar treatments (although they have slightly different diagnoses) and most of our conversations have been related to that. Wanda has been through similar circumstances before and has been offering advice to us. I apologize that we have not been very focused on TOPS or weight loss lately!

Are you still going to TOPS? If so, how is your chapter doing? Ours has been in a bit of a slump, but we have a couple of new members and are hoping we can get motivated again. One of the new members is the husband of another member. He joined a few months ago mainly to help support her, although he does want to lose a few pounds himself. The other new member is a friend of theirs who just joined a couple of weeks ago. We had a guest speaker- a nutritionist- at our meeting and we asked people to bring one or more guests. Most of us didn't manage to come up with anyone to bring, but they did and she decided to join. She told us she had belonged to TOPS years ago. She had been losing weight on her own before she joined us, but she had a nice loss this week.

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10/10/15 3:03 P

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just cannot keep up with all you who post here seems you have formed a real friendship
best wishes to you all
one day at a time
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SOVTWALKER's Photo SOVTWALKER Posts: 15,370
10/7/15 8:16 P

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Sunny, it would be a good idea to have a backup plan in the event that you were unable to get him to his appointments! We were fortunate in that Rodney was able to drive himself to his radiation up until the last week. It is an hour drive one way to the hospital where he was having it done. We had friends and relatives who offered to help but we really didn't want to ask them if we didn't have to. Some of them live near the hospital but they had to drive all the way to our house to get him and bring him home. He was getting his radiation during the summer and his brother is a teacher so has the summer off. He came down one day and took him for radiation that final week- and he also went with him on the first day. Our son was unemployed at the time so he took him one day and his girlfriend is also a teacher with summers off so she took him one day (our son had an appointment that day). On his final day our daughter took time off from work and came down to pick him up and then when he was finished she dropped him off at his brother's house, which is not far from the hospital and she went to work for the rest of the day. I had planned to drive up to his brother's to get him when I got out of work but his brother brought him home. I think there is an organization around here that does provide transportation for things like that (I think they have volunteers who do it) but we didn't check into it because we were able to manage on our own. Thankfully he is able to drive himself to chemo now too and that is being done a bit closer to home. This is his off week so he only had to have blood drawn and they gave him a form to bring with him so he could do it at the lab closest to us. Next week he will start round 2 of the chemo and he will be starting the new plan which includes the infusions plus taking pills for two weeks at a time- assuming his body can handle it. So far his blood counts are not in the danger zone but they have dropped. Hopefully it all works to keep the cancer from coming back. Our husbands have just as much of a chance as anyone of being one of the long-term survivors!

Bev

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10/7/15 9:52 A

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That is so sweet, Wanda. You certainly are a dear and caring person. Our problem is that we live outside the city limits and even our church is a 36 mile drive, one way! I think there are some folks I could call, but being so far away I would really not want to impose unless it was really an emergency! I'm thinking that if I did call social services that they might have something in place in our area and there are a couple neighbors out here who I might be able to ask. The thought had hardly crossed my mind until something happens to make your mind think of the possibility! Well, hopefully nothing else will pop up here and I'm sure going to be taking more care with what I'm eating from now on! My tummy is still sore from that episode, but thankfully no more nausea or vomiting! emoticon Thanks for your good suggestions and I think I will start checking around just to investigate the possibilities!

Well, hope everyone is having a good week. I know we are all trying to stay on the positive side of the street and do the best we can each and every day!

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Sunny

The Lord is my strength and my song.

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LIVINTODAY's Photo LIVINTODAY Posts: 9,300
10/6/15 3:44 P

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So sorry to hear about your food poisoning, Sunny! I know what you mean about the importance of having someone who can help with transportation. He just can't miss those chemo or radiation appointments. I'm surprised that you were able to get through and get back home before you let yourself be sick. Does your local senior center have a shuttle service to that can help in those situations? Ours does. We also have a county transportation service (mini buses) that gets people out for shopping and appointments. Also if you belong to a church, perhaps your pastor would be willing to put a request for people to volunteer to transport in an emergency - if you just had two or three phone numbers for people that you could call, it would give you and your husband great peace of mind. These chemo and radiation appoints will be over before long and that will be great.

Wish I lived near - I would certainly volunteer!!

Wanda

Believe in Miracles.
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SUNNYSIDE's Photo SUNNYSIDE Posts: 2,862
10/6/15 8:28 A

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Hi Bev,

You are so right about things having improved since our hubbies were hooked up to all the tubes, IV's, feeding tubes, etc., etc. I was fortunate however that they had him off all his lines by the time he left the rehab facility. The medications were pretty daunting however and I'm thankful now also that he is not taking nearly as many as when he was first released! No, he is not diabetic, thankfully so we don't have to be quite as concerned with his diet and they just want him to be able to keep his weigh where it is and not loose any more. He does not really have a taste for the sweet foods, however because his taste buds are so messed up from everything.

I got a bout of food poisoning yesterday. I had a frozen pizza that evidently was tainted and thank goodness, Ray didn't have any of it. I started feeling cramps about 45 minutes after eating it and had to drive Ray for his radiation treatment. Cramps just kept getting worse, so by the time we got home I took a gas pill thinking maybe it was gas, but things only got worse until I guess I threw up everything that was in my tummy and it finally subsided! It is a little scary to think of me getting sick when my hubby has to depend on me. I guess I should try to find some alternate person who could at least take him to his appointments if Lord forbid, I would not be able to do it for a time. We are so far out of town that it would present a problem. Oh well, better not borrow troubles. I'm feeling A-OK again and ready to resume my duties!

That was great news that your husband was approved for his SS disability! That should really be a help to you when he is fully retired and gives a little more peace of mind.

Well, take care! Today is another new day and one day closer to being off treatments!

Hugs,
Sunny

The Lord is my strength and my song.

-Exodus 15:2


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SOVTWALKER's Photo SOVTWALKER Posts: 15,370
10/5/15 9:05 P

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Sunny I can't remember, is Ray diabetic? Rodney was even before the Whipple but he didn't take insulin until after his surgery. He was drinking the Boost Glucose Control shakes at first but one week the store was out of them and I bought Glucerna and he liked them better. If Ray doesn't have to watch his carbs there are more options available. Rodney did splurge once and get a shake from McDonald's but he can't do that often.

I know what you mean about enjoying a little time away. For a while I felt like my whole life revolved around doctor's appointments, hooking up, unhooking, and flushing IVs, and keeping track of medications, but fortunately it isn't quite so bad now. We still have medications to keep track of, but no more IVs or drains thank goodness. By the way I don't think I posted an update after we found out, but my hubby did get approved for Social Security disability and he has already gotten his first payment! It was just two weeks from the time I submitted his application to the time the money was in our bank account. It took two more days before we got the notification by mail that it was approved.

Keep plugging away everyone- and yes, as Sunny and Bernice (Mayber) say- one day at a time.

Bev

Edited by: SOVTWALKER at: 10/5/2015 (21:07)
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10/5/15 9:59 A

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That is a good suggestion, Wanda. I think I'll try getting my hubby a milkshake when we go out next time to see if he can drink it! He is not doing good with drinking milk as he says it just tastes awful to him. A shake may be a little different story however!

The "me" time is almost a necessity! I am thankful that I'm able to leave the house for shopping and visiting friends and church. When he first got home this was not an option, but for now I feel he can manage by himself while I take these excursions! It does do a caregiver a lot of good just to be able to have time to rejuvenate oneself on occasion!

Best wishes to you too and I'll be hoping and praying we all have a successful week. Really you just have to take it one day at a time!

Lots of Hugs,

Sunny emoticon emoticon

The Lord is my strength and my song.

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10/3/15 10:35 A

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Your husbands are so lucky to have you girls!! I know they appreciate their good fortune too!

If they can tolerate dairy, one thing that helps to keep their caloric level up and their weight on is milk shakes! I know that Ensure and those other drinks are great too and I think you can even make a milk shake with them. My husband has always loved milk shakes and he seems to tolerate them well so he gets them sometimes when we are out and I frequently make them at home.

I hope you all have a good, pain-free weekend!
Make time to relax and take "me" time even if it is just measured in minutes.
Wanda

Wanda

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10/1/15 10:23 A

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It was very interesting to read both your comments, and I think we will have to work out a lot of the same things regarding diet and what he can and can't eat without being in too much pain! He knows that he can't loose any more weight as now it is approaching nearly 60 pounds he has lost since this all started and he was not overweight at the start! He does seem to be able to drink the green drinks I've made him in my Nutri-Bullet. I put in lettuce, veggies, protein powder, a fruit of some sort, a few nuts and just blast it with the Nutri-Bullet. It's an easy way to get the veggies into him and he seems to enjoy drinking it. The chemo yesterday did not seem to hit him quite as hard as the first one, but I'll see how he is feeling today.

Thanks for your suggestions and the experiences you have both gone through. Everyone is so different and these cancers can take so many forms, but it does help to hear from others who are going through very similar trials! Hopefully we will all be able to keep good attitudes going and learn wisdom as we go!

God bless,
Sunny emoticon

The Lord is my strength and my song.

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10/1/15 6:50 A

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Wanda, we have not met with a nutritionist recently. Shortly after his surgery they did have him seeing one because he was severely malnourished. He doesn't eat any of the gassy vegetables like broccoli or cabbage and he doesn't eat much of anything with a lot of fiber. He hasn't eaten an apple other than the day we went apple picking and he had one or two. He does like his pies, especially since he has been trying to gain back a few pounds before the chemo takes them off again. I make them with Splenda due to him being diabetic, but even without the sugar a pie still has plenty of carbs. He doesn't drink carbonated beverages any more, just water or vitamin water- and Glucerna shakes two or three times a day. He takes digestive enzyme pills (Creon) with every meal or snack and takes 40 mg of Prilosec twice a day. I think he is at 13 pills a day now (8 in the morning and 5 in the evening), but if we counted the enzyme pills and gas pills that he takes with his meals it would probably be about the same as your hubby.

Well I need to get ready for work so I need to get off here now. Have a great day everyone!

Bev

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9/30/15 9:48 P

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Bev, have you and your husband met with a dietician? It was very helpful for us after my hubs surgery. As I think I said before, they removed 8 inches of his esophagus and over 1/2 his stomach. You are absolutely right that these surgeries change their digestion forever.

For a long time Mal ate much smaller amounts of food. There also some foods that caused him tremendous pain....to the point that he would end up in bed curled up in pain after some meals. It took time to figure out what he could and could not eat. Because his stomach emptied so slowly, it meant that sometimes it would be a matter of what he ate for lunch not playing well with what he ate for breakfast. I think I just developed a sixth sense for what I could cook for dinner but I needed to know what he had for the two previous meals. Also, he could not lie down after eating so we ate dinner early to give his stomach time to at least begin emptying before he went to bed.

The dietician explained to us that he might not be able to eat simple sugars. The first time I sent him to bed in terrible pain was because I had sliced up an apple for him for a snack. OMG...it was horrible. Her explanation was that all raw fruits are simple sugars but that when they are cooked they morph into complex sugars which don't cause him any problem. So....applesauce instead of an apple, canned fruits instead of raw fruits; he could eat apple crisp, any kind of pie, etc. because those fruits were baked and therefore were complex sugars.

Another thing she explained was that he couldn't eat stringy vegetables like asparagus, broccoli, or cabbage unless they were chopped up rather small and chewed very well. The reason is that long fibers actually can form into balls (think of a cat's hairballs); when this happens it is very difficult to get them to pass through the stomach and hubs ended up in pain and occasionally even vomiting. I learned to chop those veggies instead of serving broccoli spears or asparagus spears of slicing cabbage into long strips.

The frustrating thing was that there was so much trial and error and sometimes it meant pain for him. As you know, the surgery was enough pain; I would feel so bad for him. It has been many years and gradually he was able to eat three reasonable sized meals a day. He doesn't eat simple sugars....If I have an apple, I might share a slice, yep! one slice is all he gets. He has a beer every night before dinner; our doctor said that alcohol numbs the stomach a bit and that is why he was able to eat dinner more comfortably. He started with 1/2 a beer and gradually was able to drink the whole thing. I don't know, doctors today might say that is nonsense but it seemed to help us.

It might be better if your husband can adjust without any pills to move things through faster. Mal was given Propulsid to increase his motility and it was taken off the market because of heart issues; a few years later the company did a drug study to try to get it back on the market and hubs became one of the people in the study. He was convinced he would be okay because he had taken it safely before. Well, after a few years, he suffered cardiac arrest after the Propulsid had affected the electrical system of his heart. He now has a pacemaker. When he came out of the cardiac arrest, his heart threw a clot that caused a stroke; his side effects are minimal but we just wish we had never heard of Propulsid. The drug study was a failure and the drug has never come back on the market in the United States. Mal now takes 29 pills a day and probably will for the rest of his life. In spite of everything I can say we are blessed. It is 24 years this month since his cancer and he got his pacemaker 8 years ago in 2007.

Sorry, long winded tonight! I'm praying for all of our husbands and hopefully we will have them with us for a long time. One thing I know is that we, as a couple, have sure learned to appreciate each other.

Sunny, so glad Ray's brain scan was clear! Hopefully the next abdominal scans will be also. Wow! It has to be very hard on him to go through chemo and radiation at the same time!
My heart goes out to all of our husbands.

Take care,
Wanda

Edited by: LIVINTODAY at: 9/30/2015 (21:53)
Wanda

Believe in Miracles.
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9/30/15 6:51 P

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The Whipple is a very tough surgery Sunny, and it changes the digestive system forever. My husband was just getting to the point that he could eat more after 6 months, although he pays for it after he eats. He still has a lot of stomach pain, and I guess they figure it is because things are moving through his digestive system too slowly. They talked about giving him something to help but the medication they had in mind can react negatively with one of his other medications. At the moment they say there is no evidence of any more cancer, but I doubt if he will ever get his full strength back. Because his job is physical in nature I don't believe he will be capable of doing it again. We have applied for social security disability for him and should have an answer soon on whether he will get it or not. Even if he doesn't get approved he will be able to retire in May next year so that is the back-up plan.

Good news about Ray's scans, but I'm sorry to hear he is struggling with the chemo. My husband had his second infusion yesterday. The first one wasn't too hard on him but they say they often get progressively worse. Next week he will have a week off and then start over the following week, but when he starts that round he will also be taking chemo pills.

Wanda, how is your husband doing?

I hope everyone else is healthy!

Bev

Anyone who has ever reached a goal started by taking that first step.


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9/30/15 10:34 A

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Well, I'd better check in here for a quick update as well! It was nice seeing both your posts, and Bev, I'm also so sorry you had that blood clot scare with your husband! It is a good thing you were on top of things and got him in to see the Dr. as quickly as you did!

We did get the results of Ray's scan's back and his brain scan was clear with no sign of cancer having spread. That was really a great relief. They did see some suspicious activity in the abdominal cavity which they will have to monitor and rescan in about 3 months. I wish I could say that his chemo went well, but seems every day has him feeling worse and he had another very big drop in weight. The Dr. was very concerned and said that today they may suspend his chemo or change the dosage. We will find out what they want to do today. The radiation treatments are going along ok although it is very uncomfortable for him to lay on the very hard table for the 10 minutes it takes since he has no padding of his own. Cancer is sure a horrible foe. I have a much greater appreciation now of others who have fought this battle. I went through ovarian cancer myself in 2006, but sure did not have the struggles that my husband is going through.

Well, all we can do is keep our chins up and just take one day at a time and do what we can. Best wishes to you both and may there be better days ahead! emoticon

The Lord is my strength and my song.

-Exodus 15:2


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LIVINTODAY's Photo LIVINTODAY Posts: 9,300
9/27/15 10:58 A

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Goodness, Bev! I'm sure glad his clot was NOT a deep vein Thrombosis. That really can be serious.

So glad that chemo hasn't been too rough so far; I do think they have been making progress with new chemo drugs and finding ways to help patients cope. I'm praying that you and your hubby will have this all behind you and he'll be healthy and strong by this time next year. I know that seems like a long time but it takes a long time to really get back to normal.

I'm also praying that he will do much better than expected instead of as good as can be expected.

Don't forget to take care of yourself too. I know the kind of bone-weary fatigue that can hit care-givers too. Bless you both!
Wanda

Wanda

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9/27/15 10:18 A

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I realized that I never came back on here and updated what we found out about hubby's leg. It was in fact a blood clot, but it was not in a deep vein. They told us it could have progressed to a deep vein thrombosis and that he is at a high risk for more clots because of the cancer/chemo so they have put him on blood thinner shots for at least the next four weeks. Other than that he seems to be handling the first treatment pretty well. He has been more tired than normal and he seems to be having more problems with gas than usual, but we are not sure if that is related to the chemo or not.

I hope everyone else is doing well- or at least as well as can be expected. The NP at the oncology clinic told us last week that she likes to use the expression doing as well as they can when someone asks how someone else is doing.

Bev

Anyone who has ever reached a goal started by taking that first step.


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9/24/15 12:34 P

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Goodness Wanda you are going through a lot too I'd say. I hope it all turns out well. I am sitting at the oncology clinic with my hubby. He was having pain in his leg this morning so they are checking to be sure it is not a blood clot. Hopefully it is nothing but better safe than sorry.
BEV

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9/24/15 10:40 A

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Good Morning Everyone,

Well, can't believe we are almost done with another week! Where is the time going anyway?

Wanda, I'm so sorry to hear that your husband also is having major health challenges. It sounds serious, but I hope that when you get back all the test results that it will be something that they can treat very successfully and get him up and feeling his best again! I know we worry about them so much and hate to think of what life would be without them. Every day is a gift. Enjoy your company! I think that is what I need to get motivated on my house cleaning as well! For the most part it's ok, but I have one bedroom that I dedicated for storage. It is mostly the things we brought back last year from when my sister passed away and we had to clear out the house and sell it. I just could not part with a lot of the sentimental things and now I'm still trying to go through and decide really what I need to keep. It is hard to part with things that hold a lot of memories from you life, but at some point I guess we just have to let them go. My pot shelves are so decorated now with the china from the "old" country. Things that my great grandparents had in Germany! Oh well, I guess it makes for good conversation pieces anyway! emoticon Also, congratulations on a great weight loss from last week! That is wonderful and it always seems to inspire to keep going when you have good success like that! I really need to get myself going. I know I'd feel so much better with my pants fitting looser again. I hate that feeling of being squeezed and you hate to give in and go buy a bigger size! Yuck!

Bev, I'm so glad your hubby did not have any bad reaction from his first chemo session. Ray got through his first one yesterday without too many difficulties either, thank the Lord! I felt so bad because he had to have the PET the day before, and the Brain Scan MRI was on the same day. They have to use that contrast solution and the radioactive isotopes and then the chemo on top of all that! Ugh! It is sort of amazing what the body can withstand. At any rate, he felt tired also and rather light headed while they were administering it, but no nausea and he came home and had a good sized dinner, so I was very happy about that! His chemo sessions take 3 hours to complete, so they are pretty long sessions. I'm praying also that his veins will continue to hold out as he is not eligible for them to be able to put the port in. At least, like you say there is less chance of infection just doing it through a regular IV, so have to look at the positive aspects.

Well, guess I've rambled on long enough. Everyone have a great week. and good luck on the eating plans for the week!

Oh yes, I did want to mention that we will have the results from Ray's scans when we go see the radiologist to start his radiation treatments tomorrow! I'm hoping they will be good!!

emoticon

The Lord is my strength and my song.

-Exodus 15:2


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9/24/15 6:47 A

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emoticon emoticon emoticon emoticon emoticon emoticon emoticon emoticon emoticon emoticon emoticon

Sounds like so many of us have husbands with major health issues. I guess it is just that time in our lives. My hubs is having a CT scan tomorrow morning. He has lost 30 lbs - was slender before he started losing. He feels exhausted and just generally unwell but is trying to keep up with all his usual activities. We have been through so much testing and have appointments scheduled up to October 29; hopefully by then we will know something. His cancer history is old; esophageal cancer in 1991 and several skin cancers but it is a little scary right now. I hate that it is taking so long.

Prayers for all who are suffering and all team members who are care givers. Be kind to yourselves and remain aware that being kind includes taking care of YOUR health!

I'm trying to get some fall cleaning done this week; we have company coming from out of town on Friday so that is the extra push I needed. I'm hoping it translates into extra exercise but I'm not walking as much as usual. This week I had a 3 lb loss and I would love to keep that going at Monday's weigh-in. I'm going to really have to watch what I cook, and eat, with company here.

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Edited by: LIVINTODAY at: 9/24/2015 (06:50)
Wanda

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9/23/15 6:58 P

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I hope all the scans were good Sunny. My hubby is not having a port for his chemo either. In his case the drug they are giving him only infuses for 30 - 40 minutes so they don't feel he will need a port. She did say yesterday that if he has problems with his veins in the future they may need to put in a port but they are hoping not to, as that can have its own problems. So far today he says he has been feeling okay but maybe a bit more tired than usual. I hope Ray tolerates his treatment well too. Let's hope they both do well with their treatment and next year we can all celebrate good health.

Bev

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9/23/15 8:59 A

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Yes, I have heard the same things, Bev. Yesterday I took him in for his PET scan which is supposed to show if the cancer has spread anywhere outside his lung and then this a.m. we go for his brain MRI and after that he is off for his 1st chemo treatment. This Friday he will start on radiation therapy! Boy, I hardly know if I'm coming or going. They are going to just use a regular IV drip for his chemo because he was not eligible to have the port placed. I felt bad about that because now every week they will be trying to find a vein that they can use. Not something either one of us is looking forward to, but they have made a lot of strides and have medications to help with the side effects. We just have to try and look past these difficult days and hopefully after treatment look forward to being cancer free! That sure would be terrific!!

Ray's Dr. told him he could stop with the Creon awhile back, but I have a feeling a lot of Ray's problem is the gas build up also as he seems to feel better if he walks around for awhile.

Well, take care and keep your chin up! I'll try to do the same.

Mayber, it was good to read your post and always good to hear from you. I think a lot of the Tops Pals are not able to get on here like they used to. Probably a lot are on Facebook now and hard to keep up with both!!

Best wishes and have a good week!

Oh, yes, I'm up another 2 pounds, so I've got to really start watching what I'm putting into my mouth. I have that problem of trying to get my hubby to eat more to keep his weight up and it is difficult when I need to cut back. It sort of blows your mind thinking in 2 different directions! Oh well, one day at a time.

The Lord is my strength and my song.

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9/23/15 6:24 A

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I had a pretty big gain last week and this week is not looking all that great either but I still have a couple of days before I have to face the scale. My hubby has been trying to gain a few pounds before he started chemo since he figured he might lose some then. Unfortunately I gained just as much or more than he did!

Sunny, my husband still has quite a bit of digestive issues but it has improved from what it was right after the surgery. He is able to eat as much as he wants now, but he still avoids gassy foods because a lot of his problems are with gas buildup. He takes gas pills (along with his Creon) with every meal and it helps, but doesn't prevent it totally. He had his first chemo infusion yesterday. So far it doesn't seem to be having much of an effect but they say the first 24 hours usually aren't bad but the next day he might start to experience some side effects. They also say it tends to be cumulative so that it often gets worse with each treatment. I have read on the Facebook Whipple Survivor Group that most people did okay with the first one or two and then after that it kicked their butts. I hope Ray is doing well.

Bev

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9/22/15 11:04 A

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thank you Sunnyside do not get on the teams very often but when do have the time go back and read the post
Nice to see postings have not done well weight wise the last couple months trying hard to get back on track
One day at a time love prayers peace God Bless

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9/14/15 11:22 A

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Good morning Bev & Bernice. Good reading your posts this morning. Bernice, it sounds like you lost your life partner since the last time I was active with Tops Pals, and I'm so sorry. Please accept my deepest sympathies. It is so hard to loose the love of your life, but it sounds like you made the most of the time you had with him and that is so important!

Bev, is your husbands stomach doing any better now from his Whipple procedure? Ray is still experiencing a lot of stomach discomfort after he eats and feels so full and nauseated. The Dr. told him it could take up to 6 months to completely recover from the Whipple. It will be 4 months now for Ray since his surgery. The Dr. gave him some medication to increase his appetite and that has helped quite a bit so that he is eating more. I'm just hoping and praying that the chemo treatments will not mess that all up. They also told us about the white blood cell deficiency that could possibly occur. I guess there is some type of injection they can administer if that happens to boost the count as well. I'm sure they take every precaution and monitor the situation. We got a nice packet of information telling us what to expect, when to call the Dr., etc., etc.

Well, they still have not called to schedule the placement of his port, so I've got to go rattle some cages about that as he is scheduled to start the chemo on Wed.

Take care and I'm sure when things settle down we will be able to focus more on our weight loss goals. Since this is Monday, I'm feeling more committed to starting off the week in a positive direction and not let my emotions take control of my eating!

Hugs to all,

Sunny

The Lord is my strength and my song.

-Exodus 15:2


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9/13/15 3:53 P

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Sunny, I hope Ray does well with the treatment. My hubby did quite well with radiation, but he didn't have the added complication of having lung cancer at the same time and he also wasn't doing chemo infusions at the same time. He got very tired from it and the last couple of weeks he did have diarrhea but other than that he did quite well. They gave him Zofran for nausea but he only ended up taking it a couple of times since he didn't have a lot of nausea. He did lose a few pounds, but his weight loss during radiation was not drastic. He has lost about 65 pounds since he first got sick, but 25 of that was prior to diagnosis and another 25-30 was after his Whipple. Some of it he needed to lose but he didn't need to lose quite that much. I think he looks too thin now- and he thinks he looks a lot older. I might agree but I don't tell him that.

My hubby sees his surgeon again on Tuesday.The news on his most recent labs and his scan last week was mostly good, but they did see something of concern on his scan. Thankfully there was no sign of cancer but they mentioned an internal hernia and the possibility of a bowel obstruction. It isn't clear to me if they think there is an obstruction or simply that the hernia could cause one, but we will find out more when we see the surgeon on Tuesday. Assuming nothing needs to be done right away he is supposed to start chemo infusions on the 22nd. That is supposed to be for six 3-week cycles (once a week for two weeks, then a week off) but I have heard that low blood counts cause them to skip a week on occasion so it might last a bit longer than the 18 weeks planned.

Bernice, I agree that hearing the numbers won't change anything and yes we need to concern ourselves with now and not what the future might bring, but I am a numbers person (I work in accounting) so of course I want to see numbers. I have accepted that I won't get the information I wanted. Hubby is planning to retire as soon as he turns 62 next May (unless he gets approved for SSDI before then) so that he can have time for things he enjoys doing rather than spending all day at work. His brother is planning to retire after this school year, so they will be able to spend time together when both my SIL and I are working (since we are younger than the men).

I hope everyone else is doing well. I can't say that I have been losing weight, but at least I have not been gaining.

Bev

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9/13/15 2:29 P

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Sorry to hear about illnesses and not getting answers from medical people that you want
Maybe it is just that they do not know either percentages are just that percent that may get it back
My advice is to continue to live you life as if it will go on and do not seek problems ahead of time
We lived one day at a time and treasure those moments we had together
What ever will be will be and no matter how much you try to prepare at the time it happens you are still shocked
You are in thoughts and prayers

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SUNNYSIDE's Photo SUNNYSIDE Posts: 2,862
9/13/15 11:12 A

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Hi Tops Pals,

Thought I'd check in this morning to say hello. Bev, it seems our hubby's are sure going through things on a very similar time schedule. We do have a plan of action in place now, but I'm not looking forward to it to say the least. He starts his Chemotherapy on Wednesday and that will be once a week for the next 4 months. His radiation treatments start on Tuesday and will go for 5-6 weeks and will be treated daily. I sure wish they would come up with a better plan of treatment, but this seems to be sort of standard in the serious cancers. Since they can't operate, they intend to try and shrink down the areas in his lung as much as possible and stop the cancer cells from dividing. It is really scary to me because he just can't afford to loose any more weight and we know that one of the side effects will be more nausea and loss of taste sensations. I will just hope and pray that these do not become really big issues for him and that he will at least be able to maintain the weight he is at now!

Best wishes to you and your husband as you go forward with his treatments. I'm glad I have a sounding board with you and thanks so much. Wanda, it is very encouraging to see your posts and to know that your husband did so much better than the Dr.'s gave him hope for. I'm just trying to take one day at a time and keep strong.

Hugs,
Sunny

The Lord is my strength and my song.

-Exodus 15:2


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SOVTWALKER's Photo SOVTWALKER Posts: 15,370
9/10/15 6:34 A

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She does answer questions about his treatment, but she tends to feed us information in bits and pieces and often only after we ask for it. I don't think she is really trying to withhold information from us so much as it is that she feels it is better to provide only as much information as is absolutely necessary. Some people might like that but we don't work that way. We want to know up front what we are in for. It may be that she doesn't want to tell us too much ahead of time because the plan can change, and we do understand that and won't be surprised if it does, but we like more information and not less. Not discussing the likelihood of a recurrence is not going to keep him from thinking about it.



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9/9/15 10:58 P

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I wonder about contacting the American Cancer Society if you just need statistics. I can see where she is coming from in a way. She doesn't know how your husband will react to some information and she may be working hard to keep him positive because a positive attitude really makes a difference in healing.

It is hard now for her to discuss recurrences when she doesn't yet have him in remission. Even then it is hard because you don't want a patient to lose hope because of the fear of a recurrence. We were told that my husband definitely WOULD have recurrences because there was no treatment for his cancer beyond surgery and no likelihood that surgery would get it all.

We were told he had a 5% chance to still be alive in 5 years but that he would have recurrences during that time and no chance to survive the cancer. Voila! Here we are 24 years later this week. I have to say that hearing that really shook his faith and I wished, at the time, that I had been told this privately. I was very afraid that he would quit fighting.

Your husband is lucky to have you at his side and you know what information you need but some of it you may want to get without him present. I guess I thought at first that she was not answering questions about his treatment or decisions you were having to make.

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Wanda

Believe in Miracles.
Forgive Everyone.
Life is not fair, but it is good.

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SOVTWALKER's Photo SOVTWALKER Posts: 15,370
9/9/15 8:49 P

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We will ask the questions but we may not get the answers. I asked her once before about the likelihood of a recurrence and she wouldn't even discuss it. She told me we should not even worry about that because no one can predict how any individual will do. I understand all of that and I was not looking for specifics of his case because I do realize no one knows what the future holds. All I was looking for was a general idea of the percentage of those with this type of cancer at the stage he is at who have a recurrence (is it 80% or 20%). She wouldn't tell us that, but I am sure the information is out there somewhere. I'm not trying to be negative but I also feel I need to have an understanding of what to expect. I think she just wants us to look at the positives and not even think about the negative what-ifs, but I don't work that way. I need to be aware of both.

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LIVINTODAY's Photo LIVINTODAY Posts: 9,300
9/9/15 8:33 P

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Bev, ASK the questions - all the questions you want. It is her job to answer them. You should be fully informed and fully understand. It is horrible to have a seriously ill husband and feel like you can't get the information you need. Doctors need to make time for questions!! I have had doctors who seemed indignant when they had to explain something.......horrible!

Patients and their families go through enough without getting ATTITUDE from anyone who is supposed to be helping them! That goes for everyone from the doctors to the techs to the servers in the cafeteria. You are doing your best for your loved one and they should be too!

Edited by: LIVINTODAY at: 9/9/2015 (20:35)
Wanda

Believe in Miracles.
Forgive Everyone.
Life is not fair, but it is good.

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9/9/15 8:21 P

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I hope the appointment went well today Sunny and that they will come up with a treatment plan that will work for him without a lot of side effects. My hubby had a CT scan yesterday and we are supposed to see his oncologist tomorrow afternoon to find out the results of that as well as the bloodwork he had done two weeks ago. I have seen those results online and most of it looks okay but there were a couple of things that we had concerns about so I am hoping she will discuss them with us. Sometimes I don't feel she like us asking so many questions, but I am one who likes all the information not just some of it. I am expecting she will schedule him for his first chemo infusion at tomorrow's appointment as well.

Hang in there my friend!

Bev


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9/9/15 8:55 A

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Bev, it sounds like you have some good solid plans in place, and that is so important! I'm glad that retirement is getting closer for both your hubby and yourself, and love the plans you mentioned about going to Florida in the winter months to escape the cold during the worst parts of the year! It is so true we have to focus on the positive and try to not dwell on all the negative aspects. Sometimes that is easier said than done, but worry is hard on the caregiver as well as the patient!

We saw the lab reports concerning my husbands lung cancer and this morning we are going into the Dr. so he can explain them in laymans terms so we can understand. From what I gathered, the nodules on his right lung have grown in size considerably since the last imaging was done in May. He mentioned extensive arthritic conditions and plaque that has narrowed something. (Unable to decipher the medical jargon). Well, I'll know more today and I think we will feel a bit better knowing what to expect as far as upcoming treatments are concerned.

Anyway, good to hear from you and keep hanging in there. All we can do is live our lives as best we can and to the fullest for however long we have in this life. I'm just putting it in the Lord's hands and will trust in Him for the outcome!

Have a great day. I sure miss seeing the beautiful fall leaves. This time last year we were enjoying them so much while we were in Ohio!!

The Lord is my strength and my song.

-Exodus 15:2


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9/2/15 11:00 P

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It is great to hear the success stories now and then because the statistics for pancreatic and bile duct cancer (and esophageal too) are not very encouraging. I keep saying that when we see the 5-year survival statistics we know those are based on people who were diagnosed at least five years ago and maybe they have come up with treatments that work better over those years. I believe in trying not to dwell on what might happen but I also feel that I need to be realistic enough to realize things may not go the way we want them to. I am still trying to find the right mix of optimism and realism. Most people say that over time the constant worry will diminish but it usually does not go away completely and they just have to learn to focus on something else when the negative thoughts creep in. At this point I really don't think my hubby will ever return to his job (which is fairly physically demanding), but I don't expect him to be an invalid either. My hope is that he will regain a lot of his strength, but he would be eligible to retire (at 62) next year anyway so we plan that he will do so. That way he will have time to do things he enjoys rather than going to work every day. I will need to work two more years after he retires, but he can find things to do without me I am sure. His uncle that he is really close to has cancer that is terminal but as long as they are both able they hope to do some fishing together next spring. His brother is planning to retire after this school year so he will be able to do things with him as well. I have seen too many people who wanted to work until full retirement age (or longer) and then their health went downhill so fast they never got to enjoy retirement- and I do not plan to be one of them. If we can get our finances in order over the next year so that I can get by with less of an income I might even quit my job and work a seasonal job here in the summer and a seasonal job in Florida in the winter so that we could leave the cold and snow (that I hate) behind even before I can retire. I'm not sure that will happen but that is my goal.

Bev

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9/2/15 5:51 P

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Your story is so encouraging, Wanda! I'm so happy that your hubby has defied all the odds and that the Lord has kept him with you all these years! That does go to show the One who is in charge of everything!

It is really a miracle to watch the improvements made, even when it seems to us to be so slow going. When I think back to just one month ago until now, all I can do is thank the Lord.

It is very good to hear from you and I'm hoping to be more faithful here on Spark Pals and also trying to reach an acceptable goal weight at some point along the way! emoticon

Best wishes and thank you for taking time to write!


The Lord is my strength and my song.

-Exodus 15:2


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