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5 years post diagnosis… but bad news…

Discussion Board Forums General Discussion 5 years post diagnosis… but bad news…

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  • #51126
    gavin
    Moderator

    Hi Mary,

    A cake, yum! Sounds so much better to me than sweets! I’m glad that Tom is home, but sorry to hear about the hiccups. My dad had them as well pretty badly and he couldn’t get or do anything to get rid of them, and they annoyed him immensely. Unfortunately we don’t get Lainy’s Brioshe over here so that was a pain for my dad, but hopefully you will be able to get a bottle for Tom and that they do the trick for him.

    Here is a link to Tom’s post about the sugar that he gave Ben.

    http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=5095

    http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=5102

    Hopefully at least one of these ideas will work for Tom!

    My best wishes to you and Tom,

    Gavin

    #51125
    lainy
    Member

    AH, Mary, you have come to the right place. After Teddy’s Whipple he had hiccups for MONTHS! No one and nothing could help, they wore him down. Then a Pharmacist who was a firend said, “Shame on you Teddy, a good Sicilian like you and you never heard of Brioshe (sp)?” I ran to Walgreens and got a bottle, its much like Alka Seltzer. He took it once and had no more hiccups!!! Then he also used it for indegestion once in a while. CVS also had it. I know a few others here have taken that suggestion and it worked, but may not work for everyone.
    I am so very glad you are both home and I certainly know what you mean by saying if you were Tom you would not go back. Oh, I just remembered that Tom’s Ben took sugar. Can’t remember if it was a Tablespoon or what, perhaps someone else can tell you that. Or go to the search engine and type in hiccups.
    I hope you have a “quiet” weekend and all stays status quo!

    #51124
    marylloyd
    Member

    Thanks friends for all of your support and the needed humor, Lainey!! Maybe I’ll bake myself a cake! Tom wants me to get some halloween candy on sale but a cake sounds better! We are home for the present! If I was Tom I would refuse to go to the hospital again and just let things happen. He has had hiccoughs for 4 days now. The meds they gave us don’t work and actually cause him to have breathing issues. If anyone has a magical cure let us know. It’s probably due to liver failure. I can’t remember anyone else on here complaining about hiccoughs like this. It seems very unfair for him to have to deal with these too after everything else he’s gone through but this disease is anything but fair! I feel more rested and my oldest son moved back home after trying to live with a friend for 6 weeks. I figured it wouldn’t work out and am glad he’s home. He can help a lot, watching Tom and helping outside with things.We will just take one day at a time. Tom isn’t in pain which is the one thing he was worried about originally so that’s good. He gets confused but I would be out of my head if I had the hiccoughs for 4 days straight! They do subside a little at night so thats something. We both get some sleep.
    Pamela,
    We are from the Atwood Lake area, south of Canton about 35 miles. I can’t imagine going clear to Michigan, Columbus is bad enough! Have you ever considered transfering her care to OSU? They are great there. I credit them for giving Tom over 5 years of life that I really don’t think he would have had if he had gone elsewhere! I am so sorry for your daughter and you and your family. As hard as it is to lose my husband I can’t imagine watching one of my children go through this. It would be so heartbreaking. I wish there was something we could do for you to make things easier. We have gone to Aultman for Tom’s varices when they bleed but it is not OSU! They usually can’t even get blood or an IV started. I feel so much better when he’s at OSU so I can relate to you wanting to get to Ann Arbor but that may not be possible down the road. I have heard a lot of good things about University Hospital and of course theres Cleveland Clinic. Those are the two I would recommend that are the closest to you. If you want to e-mail me feel free. I don’t have my computer hooked up right now so I don’t respond too quickly. You can call me at 740-269-1715. I’d love to help you in anyway possible. All of our thoughts and prayers are with your daughter and your family. This is a wonderful site with tons of support. Love,Mary

    #51123
    pamela
    Member

    Mary,
    Are you from Canton, Ohio? If so, I am from Uniontown. I understand how you have to drive far to a good hospital. My daughter gets all of her treatments in Ann Arbor, Michigan which is over three hours away. I don’t know what we will do if Lauren gets worse and needs a lot of emergency care. I also understand about not sleeping in your own bed. Lauren wanted her bed in the family room so she wouldn’t miss anything. She has been wanting me to sleep there too. So I sleep on the couch with two chihuahuas climbing on me all night. I don’t mind because I want Lauren to feel safe and comfortable. I do sleep better in my bed with my husband, though. I wish you strength to get through each day and pray for your husband to feel better.

    -Pam

    #51122
    cherbourg
    Member

    Dearest Mary,

    I’m hoping you get a night’s sleep somewhere along the way. Not getting restorative rest is draining….and we all know you have to take care of the caregiver.

    I’m sending prayers for strength and tons of hugs to you. You are an amazing woman and you will make it through this rough patch. Take care of your hubby and know we are always here for you both!

    hugs,
    Pam

    #51121
    marions
    Moderator

    Mary

    #51120
    lainy
    Member

    Mary, words just escape me (believe it or not)! I thought Teddy went through so much but honestly Tom is the unfortunate winner in that department. OMGoodness! Enough! Enough for both of you. I know the Hospital is not a resort but if they would keep him a few days you could get somewhat of a rest.
    Try not to think about others and what may happen when ever. You are certainly allowed your pity party, but let me know next time at least an hour before so I can bake the cake! I am wishing for Tom to return home feeling much better!

    #51119
    marylloyd
    Member

    Hi Friends,
    The craziness continues…Tom came home on Fri the 21st. The home health nurse came and showed me how to do his IV meds on Sat and he was feeling pretty good. Sun. the family came and he started getting nauseas later in the day. Just as our daughter and her husband were leaving he started vomitting, the pumpkin pie Sarah made and blood! We rushed him up to our local hospital in Canton where he was treated for varicese in Sept but our Dr was out of town. The Dr. covering didn’t feel comfortable working on Tom which was fine because we weren’t comfortable either so they transferred him by ambulance to Columbus. This was all taking place around midnight and I was too tired to drive 2 1/2 hours there so I went home to sleep for a little bit and kept tabs on him over the phone during the night. I went down first thing Mon AM and they banded two more varices and sent him home Tues. He felt pretty good on Weds. but started getting a temp on Thurs and I couldn’t get him to stay awake so after giving him all of his IV meds, etc ,I took him back to the OSU ER. Eight hours later( 4:30 AM) ,he finally got to a room. He has been battling a VRE infection in his urine and now his drain, plus other bacteria and yeast. They changed his drain Sat, the third time in two weeks!!, gave him blood and plasma and added a new antibiotic to the program. Honestly, I think most people would never have made it through all of this. It’s just one thing after another. My son is coming home from China in two weeks and I just hope Tom can hang on that long. I was hoping he could make it through the holidays but now I just want Morgan to see him again! Right now it’s a toss-up as far as what is going to be the final straw, infection or bleeding. I hate to say it but I hope it’s infection because these bleeding episodes are horrible. It wasn’t as bad this time as in Sept but one of these times it will happen and I won’t be able to get him to the hospital in time. I just hope I’m the only one around if it does because it will be a horrific experience, I don’t want anyone else to witness it. Anyway we are going to be here in the hospital for a few more days. I told the Docs I don’t want to bring him home unless he is really doing better. These emergency runs are completely wearing me out. At least Morgan will be home to help in a little bit. Thanks for all of your words of encouragment. Obviously I will make it through as all of you have. I just dread it. I know in the next few weeks, months ,(maybe years for my parents) I’m going to lose my husband, my parents, both in their mid-eighties, even my thirteen year old dog and it is very depressing to think about. I don’t look forward to being that alone. Okay, enough of the pity party, I’ve been sleeping in chairs too much the past few weeks! I’m staying again tonight and then going home and back again tomorrow night then hopefully he can come home Tues. I really do enjoy my bed when I get a chance to sleep in it!! Take care all and I’ll keep in touch. Lainey, I will probably take you up on your offer before this is all over. Mary

    #51118
    lainy
    Member

    Darla, I LOVE that, never saw it before! Thanks for that…..

    #51117
    darla
    Participant

    Mary,

    You are a strong person too and you will be OK. None of us knew how we could possible go on without our loved ones, but we do, somehow, one day at a time.

    Jeff who lost his partner Mark to CC posted this on facebook.

    “You never know how strong you are until being strong is the only choice you have. “

    This is so true. We are stronger than we think when we need to be.

    Take care.

    Love & Hugs,
    Darla

    #51116
    lainy
    Member

    Dearest Mary, I have said several times that Tom and you reminded me of Teddy and me. Mary, you don’t have that strength right now because look at the running you do! Everything I did was right here. I was able to save my physical strength which also helped with the mental strength. I feel bad that Tom won’t talk about anything. For us, and it doesn’t work for everyone, we were very open and talkative. Teddy told me over and over that he had made his Peace with God, he told me over and over that he lived a life most men see in movies, he told me over and over that when he met me he got the life he had never had, in the love department that is. He became so close to his children a closeness he never had and they are still close to me. He got my kids and they never judged him, he was their Dad and Papa. He did it all his way but he was lucky enough to have it all. Actually the day I checked him in to the Hospice Facility should have been the hardest day of our lives, but we laughed and talked. He asked me if I had made plans. I said to date? He chuckled and said no, the Memorial. I said of course I have it’s all set (I had told him before but he forgot). He said, I should have known. He was totally at peace with himself and God. He had an exceptional mind that he could steel it like nothing I ever saw. He used to say, “I was trained by the best”. So, all that made my Care Giving so much easier. He never complained until the very last 3 days, but that was the fault of Hospice. I can understand where Tom feels cheated but I am taking a stab here and could it be possible he is afraid if he talks about ‘things’ it would upset you?
    Mary, you can e mail me anytime and if you get to a point you need to talk we can exchange phone numbers. Wish I was there and we could go for dinner so instead I am sending you a ton of cyber hugs!!! Be strong!

    #51115
    marylloyd
    Member

    Hi friends,
    Here it is Oct 20th and more updates, unfortunately not positive. We went to Columbus on on the 10th but no chemo was given due to low platelets. He was having some blood in his drain but nothing really alarming. By Weds evening it was getting worse and by Thurs even more,plus he started with the shakes and vomiting so I tried but failed to get hold of his Dr. so I ran him to the ER at OSU. I hate taking him to the ER to be admitted but had no choice. It turns out he was once again septic with bacteria in his bile and blood. They said I had gotten him there early but a week later and he is still there. They are sending him home on IV antibiotics and anti-fungal medication this time. Hopefully that cures this sepsis once and for all. They changed his drain again today, the new one wasn’t flowing properly and hopefully he will get home tomorrow. Lainey I think Tom and Teddy are a lot alike. I wish Tom accepted things as well as Teddy did, but he is younger and feels cheated about a lot of things. He started on zoloft but he’s really quiet all of the time and seems really depressed. A neighbor of ours commited suicide a few weeks ago after hearing that her cancer was back and that seems to have really bothered him a lot. Anyway we’re hanging in there as well as possible. We’ve been a team for a long time so I guess if anyone would be”wedding cake toppers”, it would be us. I really hate to see winter come- I dread emergency trips to Columbus in bad weather. I started out for home last night at 6 pm and ended up turning around and finding my way back to the hospital. It was pouring out and obviously a lot of crazy drivers got in wrecks. There were three calls for trauma cases coming to the ER right after I left!
    I hope all of you are doing well. I don’t know how you all stay so strong after losing your spouses. I really dread going through it. Take care and thanks for your support. Mary

    #51114
    marions
    Moderator

    Hello Marlene and welcome to our site. I am sorry to hear of your husband’s weight loss. Is this a recent situation or has it occurred over time? I agree with Lainy and Mary in that a metal stent is not intended to be removed and am wondering whether the stent your husband has also contained a plastic stent. This in turn can be exchanged when sludge and bile accumulates.
    I only know of one case in where a metal stent had been removed and that happened to be with my husband. There might be other people out there also it is just that personally I don

    #51113
    lainy
    Member

    Hi Mary and Tom, all sounds like good news even if you are covering a lot of territory geographically! I will keep everything I have crossed for a no side effect chemo session. I know I keep saying this but you guys so remind me of “us”. I feel like dubbing you with the title my daughter gave us when we got married, “The Wedding Cake Toppers”.

    #51112
    marions
    Moderator

    Hi Mary….what an incredible team you two are. I pulled up the trial:http://clinicaltrials.gov/ct2/show/NCT01307631 and am crossing my fingers for Tom to be enrolled. I agree with Lainy in that you have had some great physicians working with you. Tom continues to amaze me with his incredible strengths and fighting attitude. Well, he also has you behind him all the way.
    Fingers crossed for the upcoming visit. It looks like this trial is in open enrollment and should by any chance the white count be too low is there a chance that he can either, be given neupogen (Neulasta) shots or, can he wait until his blood work improves?
    Hugs and all my best wishes
    Marion

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