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Old 10-19-2011, 10:07 AM   #1
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Default esophageal cancer Update 9/1/12

Has anyone on here experienced this type of cancer? Do you know of anyone who has had this type of cancer that has survived? I have a friend whose husband was diagnosed with stage 3 esophageal cancer. He is on his 4th week of chemo and radiation treatments. He will find out in two more weeks whether or not he will have to have sugery to remove the tumor. My friend is overwhelmed and really needs someone to talk to that has been through this type of cancer, especially if the outcome was positive! She is trying to stay strong for her DH, but it has been very hard for her. Does anyone have anything encouraging that I could pass along to her?

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Old 10-19-2011, 11:46 AM   #2
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No words of wisdom for this type of cancer. Just prayers to everyone involved. She might ask at the hospital where he's receiving treatments if they have a support group.
Thoughts and prayers to all, including you for being such a good friend!
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Old 10-20-2011, 10:29 AM   #3
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No words of wisdom for this type of cancer. Just prayers to everyone involved. She might ask at the hospital where he's receiving treatments if they have a support group.
Thoughts and prayers to all, including you for being such a good friend!

Thank you!

She hasn't found too much in the way of support for this type of cancer. Generally, when she does talk to someone who knows a bit about it, it's usually negative news! I was hoping that someone out there had a positive ending to their story!

Thank you for the prayers! The more the better!
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Old 10-21-2011, 08:54 PM   #4
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I wish I could give you something positive, but the only person I know of that had this type of cancer did not survive. He was already in stage 4 when he was diagnosed, so I'm not sure what the outcome for stage 3 would be.

I hope for the best for your friend and her DH.
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Old 10-21-2011, 09:18 PM   #5
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Jay Dub's brother has Stage 3 (actually it was upgraded to Stage 4) esophageal cancer. You might send her a PM.
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Old 10-22-2011, 04:13 AM   #6
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Hello Heather. My BIL got through throat cancer this spring and summer--not the esophagus but at the base of the tongue. He was stage 2 when diagnosed and chose the most aggressive possible treatment. It was incredibly rough on him but he did respond well and at the end, when they biopsied the surrounding lymph nodes, they found no trace of the cancer so his long term outlook is very hopeful.

Don't know if this helps, but I think your friend is doing absolutely the right thing in looking for someone to talk to. My sister and her DH had several friends who'd survived cancer who were able to share some perspective and sort of day-to-day tips on how they got through it. The cancer was different in each case but a lot of the need to balance hope and fear, and deal with some horribly painful and uncomfortable side effects without getting too overwhelmed and discouraged was kind of universal, unfortunately. As Calgramma said, even if a support group doesn't deal with her DH's specific type of cancer, perspective from other people facing the overall challenge of it still might help.

The practical advice I'd pass on from talking to my sister is:

1. She and her husband need to prepare to be their own best advocates in treatment. Each case is different--it's hard to find the balance between reading scary statistics and checking as much useful information as possible, but they found it helpful not only to know what their options were, but to know the advantages and disadvantages of each. When they didn't understand something the Dr said, they asked him to explain it. They also asked the Dr to go over treatment options in detail and got a 2nd opinion prior to starting treatment. A good Dr will not in any way be offended by any of this and will be glad to work with you (as their oncologist told them). There are scary statistics out there but there are also folks like Steve Jobs who survive for years and lead a major company along the way, too. The more you know and fight for the best possible treatment, the better your odds. A tougher balance was the practical side of hospital stays--my sister said that while she very much understood that nurses and staff had a lot to take care of, she'd also go find someone when DH was in pain, or just needed to go to the bathroom, if no one showed up in a reasonable amount of time.

2. Be prepared for friends to get weird. Some will respond really supportively, others will spout horror stories or platitudes that kind of make you want to bite them. Also lots of folks will say 'let me know what I can do to help' and then disappear. Be prepared to forgive people who don't know what to say, or bungle trying to say something helpful. At the same time, don't feel guilty if you need to avoid the people whose inability to deal means they can't let up on beating you over the head with stuff they think is helpful that ISN'T for you.

3. To get people to help, don't be afraid or shy about being specific. Stuff like, 'could you drive DH to chemo next week?' or pick up kids from school, gave friends a concrete sense of something manageable they could take care of that would help. Like dealing with the Dr, it can be kind of a do-it-yourself project. If you have one friend who'd be willing to make the calls, coordinate sending updates etc take them up on that. Sometimes getting people to help means telling them when you need to be left alone. My sister kept an e-mail list, used it to send updates when she had time and also used to it to ask folks not to call when things got overwhelming for them and she couldn't handle 12 phone calls about the same thing, no matter how well intentioned.

4. My sister said there were times that her DH needed to talk about some really scary stuff, including what would happen if he didn't survive. Afterwards, he told her that being able to talk to her without her freaking out or saying 'oh, everything will be fine, don't worry,' was a huge help to him because he said the really lonely part was needing to process those thoughts but worrying about upsetting anyone--especially my sister. She said that talking to the social worker at the hospital helped her know when he just needed her to listen, and gave her the support she needed to get through those really difficult, scary conversations.

5. One thing where my sister kind of needed someone to advocate for her was in encouraging her to take care of herself, too. I think if you can do this for your friend, that will be a huge gift to her. When someone is up against something that scary, people naturally gravitate towards worrying about the person who has cancer and forget how much it overwhelms the whole family--especially the primary caregiver. I don't think my sister would have enjoyed a spa treatment when she was going through everything, but one thing she did was walk to and from the hospital to get some time outdoors by herself, and some exercise. Also even if she had to order takeout food, she made sure she and her daughter got lots of veggies and lean protein--sounds goofy, but helped. Also kind of made up for the times she ate very large quantities of chocolate. She also said the social workers at the hospital were hugely helpful. It helped that BIL, even when he really felt awful, encouraged her to take those hours a couple of times a week to talk to people who helped her keep her perspective.

Don't know if any of that would help your friend, but I hope so. I'll keep her and her husband in my prayers. I very, very much hope things go well with his treatment, and that she has plenty of love and warm support as well.
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Old 10-24-2011, 08:55 AM   #7
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Hello Heather. My BIL got through throat cancer this spring and summer--not the esophagus but at the base of the tongue. He was stage 2 when diagnosed and chose the most aggressive possible treatment. It was incredibly rough on him but he did respond well and at the end, when they biopsied the surrounding lymph nodes, they found no trace of the cancer so his long term outlook is very hopeful.

Don't know if this helps, but I think your friend is doing absolutely the right thing in looking for someone to talk to. My sister and her DH had several friends who'd survived cancer who were able to share some perspective and sort of day-to-day tips on how they got through it. The cancer was different in each case but a lot of the need to balance hope and fear, and deal with some horribly painful and uncomfortable side effects without getting too overwhelmed and discouraged was kind of universal, unfortunately. As Calgramma said, even if a support group doesn't deal with her DH's specific type of cancer, perspective from other people facing the overall challenge of it still might help.

The practical advice I'd pass on from talking to my sister is:

1. She and her husband need to prepare to be their own best advocates in treatment. Each case is different--it's hard to find the balance between reading scary statistics and checking as much useful information as possible, but they found it helpful not only to know what their options were, but to know the advantages and disadvantages of each. When they didn't understand something the Dr said, they asked him to explain it. They also asked the Dr to go over treatment options in detail and got a 2nd opinion prior to starting treatment. A good Dr will not in any way be offended by any of this and will be glad to work with you (as their oncologist told them). There are scary statistics out there but there are also folks like Steve Jobs who survive for years and lead a major company along the way, too. The more you know and fight for the best possible treatment, the better your odds. A tougher balance was the practical side of hospital stays--my sister said that while she very much understood that nurses and staff had a lot to take care of, she'd also go find someone when DH was in pain, or just needed to go to the bathroom, if no one showed up in a reasonable amount of time.

2. Be prepared for friends to get weird. Some will respond really supportively, others will spout horror stories or platitudes that kind of make you want to bite them. Also lots of folks will say 'let me know what I can do to help' and then disappear. Be prepared to forgive people who don't know what to say, or bungle trying to say something helpful. At the same time, don't feel guilty if you need to avoid the people whose inability to deal means they can't let up on beating you over the head with stuff they think is helpful that ISN'T for you.

3. To get people to help, don't be afraid or shy about being specific. Stuff like, 'could you drive DH to chemo next week?' or pick up kids from school, gave friends a concrete sense of something manageable they could take care of that would help. Like dealing with the Dr, it can be kind of a do-it-yourself project. If you have one friend who'd be willing to make the calls, coordinate sending updates etc take them up on that. Sometimes getting people to help means telling them when you need to be left alone. My sister kept an e-mail list, used it to send updates when she had time and also used to it to ask folks not to call when things got overwhelming for them and she couldn't handle 12 phone calls about the same thing, no matter how well intentioned.

4. My sister said there were times that her DH needed to talk about some really scary stuff, including what would happen if he didn't survive. Afterwards, he told her that being able to talk to her without her freaking out or saying 'oh, everything will be fine, don't worry,' was a huge help to him because he said the really lonely part was needing to process those thoughts but worrying about upsetting anyone--especially my sister. She said that talking to the social worker at the hospital helped her know when he just needed her to listen, and gave her the support she needed to get through those really difficult, scary conversations.

5. One thing where my sister kind of needed someone to advocate for her was in encouraging her to take care of herself, too. I think if you can do this for your friend, that will be a huge gift to her. When someone is up against something that scary, people naturally gravitate towards worrying about the person who has cancer and forget how much it overwhelms the whole family--especially the primary caregiver. I don't think my sister would have enjoyed a spa treatment when she was going through everything, but one thing she did was walk to and from the hospital to get some time outdoors by herself, and some exercise. Also even if she had to order takeout food, she made sure she and her daughter got lots of veggies and lean protein--sounds goofy, but helped. Also kind of made up for the times she ate very large quantities of chocolate. She also said the social workers at the hospital were hugely helpful. It helped that BIL, even when he really felt awful, encouraged her to take those hours a couple of times a week to talk to people who helped her keep her perspective.

Don't know if any of that would help your friend, but I hope so. I'll keep her and her husband in my prayers. I very, very much hope things go well with his treatment, and that she has plenty of love and warm support as well.
Thank you! I am going to print this out and give it to her. All of this is such great advice. He has two more weeks of chemo and radiation and then he will have 8 weeks to recover from that. That is when they will decide if they need to operate or not! I am so hoping they get it with the chemo and radiation. I know that the operation is very risky!

Thank you for taking the time to share your advice with me and my friend!

Heather
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Old 10-24-2011, 08:58 AM   #8
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Jay Dub's brother has Stage 3 (actually it was upgraded to Stage 4) esophageal cancer. You might send her a PM.

I might just do that!

I had helped her contact a friend of mine who had breast cancer. It was so weird. Usuallly this friend is little miss sunshine, but when my friend called her(the one who had breast cancer) the first thing that she said was, you need to get all of your affairs in order because this will be terminal! WHAT!!!!!! She was looking for support and got that! I felt so bad putting her into contact with my friend. I have never heard anything negative come out of her mouth and all of a sudden she is telling my friend that her husband is going to die! Wowsers!
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Old 10-25-2011, 06:21 PM   #9
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Thank you for your very kind words Heather. My sister and her husband went through a really tough time with all of this--the whole family did. If their experience could at least help someone a little I know that would mean a lot to her.

Please let her know she and her husband have one more person saying prayers and sending warm and healing thoughts their way.
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Old 12-22-2011, 03:57 AM   #10
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I don't have any first hand experience with esophageal cancer, but I do have a friend whose family doctor had esophageal cancer. He had to have most of his esophagus removed, but he's survived and done well. That was about 5 years ago.

All my best to your friend's husband.
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Old 12-26-2011, 05:07 PM   #11
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Two weeks ago they got the news that the cancer had spread to his hip. He went through chemo and radiation on his esophagus, but because the cancer has spread, they can't operate. They are going to start chemo and radiation on his hip, but unfortunately, they have given him 6 months to 2 years. Shelley is just a shell of what she used to be. She has lost so much weight and she just goes through the motions. It's almost like she is punishing herself because he has cancer. She won't eat anything that he can't eat. One of my co-workers brought in cupcakes the other day and Shelley LOVES her cupcakes. When she was told about them, she replied, "Yum!". When asked if she wanted some, she immediately said, "NO"! Jim is having problems eating cakes and cookies, so she won't allow herself to eat any of these things either. She is not taking our advice that she needs to take care of herself. She isn't sleeping. She's not eating correctly. She is an absolute mess. Jim keeps apologizing to her because he has cancer. It's just so sad. For a brief few weeks it seemed as though things were going to work out. I just wonder if there aren't some sort of "off the beaten path" types of treatment that could help. I always see that commercial for the Mayo clinic (I think that's the one) where the lady says she was given months to live and she went to this hospital and they said that they didn't see an expiration date stamped on her foot and she got through it. They have been getting treatment at the IU Medical Center. I

I was honest with her one day because I haven't said a whole lot to her about it. When I do, I only make positive comments like, "I know that Jim is a fighter". Stuff like that. I just outright told her that the reason that I do not say much to her is that I don't want to upset her by bringing it up. Also, I honestly do not know what she is going through and I really don't know what to say. I figured it was better to be honest with her then to just not say anything. I did tell her that I am happy to help in any way that I can even it's just to let her vent. She knows that I am praying for Jim. From the sound of it, the doctors don't seem to think that there is anything that they can do for him other than to prolong the cancer's effects.

I wanted to update everyone on what they have found out. Jim is only 48 years old. I know that a lot can come of being positive and having an "I want to live" attitude. I will let you know if I find out anything else.
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Old 12-27-2011, 07:52 AM   #12
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Sorry to hear about your friend's husband. You're doing the best thing for her by just being available for her.

My brother-in-law had esophageal cancer almost six years ago. At that time drs. were able to do a resection and chemo. He went into remission but they told him that if it returned, there wasn't much they would be able to do for him. Two years later, he developed bladder cancer. The drs. did surgery and bio-chemo and Chris went into remission. Last Jan., he was having shoulder and back pain. Drs. did scans and biopsies and found that the esophageal cancer had returned. Surgery was not an option because it was wrapped around the aorta and also it had spread to his liver and lungs. The best they would give him is a year. He's been doing chemo and is on morphine but still at home without aides other than his wife and son. When DH saw him in Oct., he said he didn't think Chris would make it to the end of the year but he's still around. We're going to see them this weekend. DH says that what's keeping Chris around is stubborness. He doesn't want to die during the holidays because Shelly's (his wife) dad died around Christmas two years ago. He also wants to hang on until April because that's when his son is getting married, so yeah, attitude does have a lot to do with it.

Praying for your friend and you.
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Old 12-29-2011, 02:30 PM   #13
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Heather, I'm so sorry to hear the news. I know you were hoping and praying so very much for a better outcome.

I think it must have helped your friend that you were open with her. I imagine just knowing you're there must help a lot. But it must be so hard for all of you who love him--and love her--to feel so powerless. Some things in life just bite so completely profoundly and horribly.

I'll be keeping all of you in my prayers, for strength, for peace, and for as much precious time for him as possible.
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Old 01-17-2012, 03:21 PM   #14
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Heather, so sorry to hear this. Please be there for your friend as much as possible., its going to be a long, hard, sad road., unfortunately, I had two experiences with esophageal cancer, my brother and a close friend, my brother fought it off for over a year, my friend, fought for a few months, both passed away from it. Will keep her and her family in my prayers. Wish I had encouraging news for her. Miracles do happen, will pray they get one.
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Old 01-18-2012, 06:34 AM   #15
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He is doing chemo treatments right now and is eating well and feeling pretty strong. He says he's going to fight this thing to the very end. She says that he has a very positive attitude and she seems to be more talkative. I think that now that the initial shock has worn off and they know exactly what they are dealing with, it has made it a bit easier to "deal" with. She is still scared to death, but she is smiling more and laughing.
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Old 06-28-2012, 06:19 PM   #16
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I don't know if anyone remembers my post here, but I wanted to update everyone on Jim's progress. He responded very well to the chemo and radiation. Although the cancer has spread to his hip bone and a couple more small areas in his bones, the tumor in his esophagus is completely gone. The doctors are amazed. They feel that because Jim responded so well to the chemo for the esophageal cancer that he will also respond well to the chemo and radiation for the cancer in his bones. He seems to be on the road to beating this thing and the doctors are just flabberghasted! I thought that you all might want to hear the good news. Our fingers are crossed that he will repsond well to the next round of treatments. It's going to be a long road, but he's a fighter!
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Old 06-28-2012, 11:52 PM   #17
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glad to hear. hugs to all of you
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Old 06-29-2012, 02:39 AM   #18
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I don't know if anyone remembers my post here, but I wanted to update everyone on Jim's progress. He responded very well to the chemo and radiation. Although the cancer has spread to his hip bone and a couple more small areas in his bones, the tumor in his esophagus is completely gone. The doctors are amazed. They feel that because Jim responded so well to the chemo for the esophageal cancer that he will also respond well to the chemo and radiation for the cancer in his bones. He seems to be on the road to beating this thing and the doctors are just flabberghasted! I thought that you all might want to hear the good news. Our fingers are crossed that he will repsond well to the next round of treatments. It's going to be a long road, but he's a fighter!
That is wonderful news! Best wishes for next round of treatment. hugs to you!
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Old 06-30-2012, 05:16 PM   #19
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Thanks guys! Shelley smiles a lot more now and is not turning down cupcakes anymore! LOL Jim is able to swallow now that the tumor has disappeared. His throat is still a little tender, but he can eat anything that he wants now, as long is it sounds good at the time. With chemo, sometimes things that sound good don't taste very good. Shelley spent a lot of time not letting herself eat fun and yummy things because Jim couldn't and she didn't think it was fair. It's nice to see her more chipper and Jim is looking really good!
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Old 09-01-2012, 10:40 AM   #20
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Two weeks ago, Jim was doing so well. They had gotten the news that even though the cancer had spread, it was shrinking because of the chemo. He was feeling great. About a week and a half ago, he started having problems breathing. They took him to the ER and told him he had Phnemoia. I know I spelled that wrong. Anyway, they gave him some medication. The next day he was acting kind of strange. He started throwing up. They took him to the ER again and they told him he was having a bad reaction from the medicine. Changed the prescription and sent him home. The next day, he could not stop throwing up. They took him back to the ER. They did more testing and found that the cancer had spread to his brain. He had multiple tumors putting pressure on the part of his brain that controls speech and walking. They were going to start radiation on Tuesday. Friday, my co-worker texted me to tell me that they were moving Jim to a private room for the family to be with him and were not giving him much longer. He passed away this morning. The cancer in his esophagus was completely gone. These two people are the nicest, most caring, wonderful people that I have ever met. It's just so sad that such bad things happen to such good people. Things were looking up, and in the blink of an eye, BAM, it all went downhill!
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Old 09-01-2012, 01:01 PM   #21
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I'm so sorry to hear this. There seemed to be so much hope for Jim. The family is in my thoughts.
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Old 09-01-2012, 04:06 PM   #22
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I'm so sorry to hear this. There seemed to be so much hope for Jim. The family is in my thoughts.

Thank you! He was such a great guy!
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Old 09-03-2012, 10:32 AM   #23
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Another thing that we learned from all of this is when the doctors were telling Shelley that they were doing full body scans to check for cancer, they were only scanning from the nose to the knees. She had no idea that they weren't scanning the brain too. She wonders if they would have caught it much earlier had the full body scan actually been a full body scan.
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Old 09-12-2012, 03:50 PM   #24
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Two weeks ago, Jim was doing so well. They had gotten the news that even though the cancer had spread, it was shrinking because of the chemo. He was feeling great. About a week and a half ago, he started having problems breathing. They took him to the ER and told him he had Phnemoia. I know I spelled that wrong. Anyway, they gave him some medication. The next day he was acting kind of strange. He started throwing up. They took him to the ER again and they told him he was having a bad reaction from the medicine. Changed the prescription and sent him home. The next day, he could not stop throwing up. They took him back to the ER. They did more testing and found that the cancer had spread to his brain. He had multiple tumors putting pressure on the part of his brain that controls speech and walking. They were going to start radiation on Tuesday. Friday, my co-worker texted me to tell me that they were moving Jim to a private room for the family to be with him and were not giving him much longer. He passed away this morning. The cancer in his esophagus was completely gone. These two people are the nicest, most caring, wonderful people that I have ever met. It's just so sad that such bad things happen to such good people. Things were looking up, and in the blink of an eye, BAM, it all went downhill!
Heather, I'm so very, very sorry to hear. Your friend and her family are in my thoughts and prayers.
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Old 09-13-2012, 05:50 AM   #25
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I'm so sorry. This is exactly what Jay Dub's brother is going through right now. They found cancer in his brain and now he is in hospice. What a tough, tough journey for everyone. My heart goes out to both families.
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