July 13, 2011 at 4:59 pm #51083jathy1125Participant
Mary-Lots of prayers for you and Tom. Prayers is the one thing we can give you, in this stressfull time.-CathyJuly 13, 2011 at 4:57 pm #51082jennifersMember
I hope they can resolve these issues quickly and Tom can enjoy plenty more quality time. Thinking and praying for you and yours…
JenJuly 13, 2011 at 4:26 pm #51081
I am once again sitting in the OSU waiting room as Tom is undergoing another procedure. We have joined the hellish life of living with a leaky drain! They finally took out his clogged internal stent last Weds. by inserting an external drain and removing it that way. He stayed overnight and of course all was well until he got home. Saturday the drain quit draining ( we didn’t know if it was just draining internally or what?!) and he started having a lot of pain and bloating and nausea. I ended up taking him back to Columbus on Sun and they checked him out, his colon was impacted so they felt that caused some of the pain and they sent him home Mon after thoroughly checking him out. He started leaking bile around his drain yesterday which just got worse as the day progressed so they are going in now to see what’s going on. As hard as it was 5 years ago to go through all of this I think it’s worse now. He’s very depressed, he knows there’s no getting “better” this time around. I’m sad and depressed and exhausted physically and emotionally. I can’t get hopeful like I did before because I know the score now. I just have to scan the names of lost friends on here to know how this is going to end. He’s already lost a lot of weight and muscle tone, even though he is usually able to eat. Like my son says he’s basically been bedridden since he came home from China 2 weeks ago. It’s shocking to see the decline. I don’t know if it’s the cancer the infections or what. He can’t have any chemo until his bilirubin is lower but like he says as bad as he feels now he can’t imagine how the chemo will affect him. I know you all have been through this, I used to read and be astonished at how fast this cancer could bring someone down-we were always so lucky. Tom always bounced back! Hopefully he will get to feeling better once they get this drain issue resolved. Thanks for listening and caring. MaryJune 27, 2011 at 10:28 pm #51080
Mary…not want I wanted to hear either, but the answer of Dr. Bloomston does does not surprise me. We have seen it plenty of times (on this site) for this cancer to spread to the duodenum. But, knowing Tom and his incredible resiliance and the incredible wife by his side a fantastic response to the treatment is to be expected.
A tidal wave of love is heading your way,
MarionJune 27, 2011 at 10:25 pm #51079
Hi, Mary. Certainly not what we hope for, I have a question. Tom seems to have similar to what Teddy had. Have they mentioned cyber knife? It will be good to see your son and just plan and live life. We are here and praying and wishing for the best.June 27, 2011 at 10:10 pm #51078
Well, the news was not what I was hoping for. It had nothing to do with insurance. Dr. Bloomston showed us the scan and showed us the “hazy” area around his duodenum that they feel is cancer recurrence. There is no surgical option. Anyway he is going to try some chemo, they feel it will keep the duodenum open longer and keep the bile flowing. Tom asked if it was terminal and the Dr. said, “Tom, you’ve had terminal cancer for 5 years , but you’ve surprised us every step of the way.”We still have to deal with the stent issue but that will come in a few weeks. Yes, I am very glad my son is coming home. He’s traveled extensively the past 5 years without getting bad news from home so it was just a matter of time. We will live as normally as possible. Hopefully we will have 5 more years. Who knows? Take care all. I appreciate your support and friendship. MaryJune 24, 2011 at 4:45 pm #51077
MARY, I so agree with Marion. (Of course I would NEVER not agree with Marion:)) Life is for the living and you are both living. Make your plans. There is nothing in the world that cannot be cancelled. I really understand though where you are coming from and with good reason, but you can’t just sit back and wait for answers that are not going to come in your time frame. Live, live, live…no one else can do that for you. Even being realistically optimistic, let’s say a year down the road the bad news boys come. Won’t you be happy to look back and know that you did everything in your power to live normal lives.
When I look back now I am so thankful that we did our very best to make life normal and not live on the ‘what if’. That is what holds me together now. I hate to sound like I am lecturing you, you have done so well this far. All I am saying is put it all on the back burner until you have something concrete to go on. I think it’s a brilliant idea….let’s all take a vacation from worry!!! I know, I really know.June 24, 2011 at 4:36 pm #51076
Mary…..Oh, yes the never ending game of the insurance companies. Cholangiocarcinoma, being that it is rare does not have a large enough patient population for increased treatments options. I am wondering: does the insurance company pay for exploratory surgery?
Mary, I believe that within the next weeks you will have more information.
Definitely, I would plan on the knee surgery. You can always cancel if needed.
You must be pretty excited; your son is coming home. I can feel your joy.
Please, share your Monday visit with the physicians with us.
Fingers crossed and good wishes are heading your way,
MarionJune 24, 2011 at 4:03 pm #51075
Lainey and Marion,
A lightbulb went off in my head yesterday as I was explaining to Tom the situation. He has negative tissue biopsies, done at least twice, maybe three times since Sept. He does not have any symptoms from the duodenum swelling, he can eat and defecate etc. So until they either have a positive biopsy or it completely closes, insurance won’t pay or they basically aren’t allowed to operate on their gut feeling that it’s back. They need a definitive diagnosis and they don’t have it. If that’s the case it’s a real worry because it may be perfectly operable now but not later. Who knows? I don’t think anyone does right now. Tom’s gone back to the idea that he doesn’t have cancer so when the time does come(if it comes) they’ll have to convince him all over again. The worst is that we are all worrying about our plans, my son is in China and coming home for seven weeks starting in July and he’s worried about whether to go back or what to do. I was going to get a double knee replacement the first of Nov but wouldn’t that be great for me to have that done and two days later his duodenum decides to close up. I won’t want to travel anywhere ( not that we have any big plans) but it’s a worry just sitting here waiting for it to happen and then knowing what he’ll have to go through, really all of us will go through, when the time comes. Hopefully they will still be able to do what their planning as far as the Whipple etc. I’ll bring all of this up Monday and see if that’s the cause of the wait and see. They’ve always been pretty aggresive with his treatment so this slow approach seems strange in a way. Take care all, MaryJune 23, 2011 at 7:39 pm #51074
Mary, I agree with what you are feeling. When Teddy’s CC returned to his duodenum we also got the wait and see approach. I swear we had the very best ONC and Radiologist there is and all they would say was what ever it is it is too small yet and his LABS were great.
Now, I am not saying this to scare you as everyone is different, but I had the gut feeling that they knew when they saw it that they could not do any more and were not going to do anymore. They just never told us. When the final prognosis came down 2 years later I look at the ONC and I said, you always knew didn’t you? He shyly said yes. At first I was angry but recovered quickly and thought about it. How would we have lived that last 2 years knowing what was coming? I feel that for us they did the right thing. We had 2 more decent years and while we worried about it, it was more of a cloudy worry. Like we knew we had to live like each day was the last….and we did. Guess what I am trying to say is sometimes there comes a time when we need to stop second guessing and looking for the worst to come. Like Teddy used to say, it is what it is, now let’s get on! Try to stay strong and enjoy things as you know they are not going to do anything at least until the Duodenum closes. What a lot of trouble from such a small piece of machinery! Please have a great weekend.June 23, 2011 at 6:48 pm #51073
Great weekend for you and Tom also including, the absence of the tummy ache. Does this mean the infection is clearing up?
Can’t wait until Monday to hear all about the visit.
All my best wishes,
MarionJune 23, 2011 at 6:18 pm #51072
Okay, I’ve been e-mailing Dr. Bloomston and he says Tom has not been hearing him clearly. There will be no surgery until his duodenum closes completely and that has not happened. I’m very confused but we are meeting with him on Monday. Hopefully things will get straightened out. I told him that we were fine with the wait and see plan when we didn’t believe it was cancer, now they’ve convinced us that it is and I don’t think too much of the wait and see idea. I’ll post after our meeting on Monday. I have a lot of questions, # 1 is how it could be cancer if the tissue biopsies have always been negative, not inconclusive but negative!
Tom is home but he’s just really tired. He’s been battling infections for a long time. They have him on Cipro now and that’s easier on him. He doesn’t have a “tummy ache!” It’s so funny, he’s always telling me he has a “tummy ache”. Everyone laughs when they hear him say that. Anyway right now we haven’t a clue what’s happening so when we figure it out I’ll let you all know. I hope everyone is doing well. Have a great weekend. Take care, MaryJune 22, 2011 at 7:08 pm #51063betsyMember
So sorry to read your posts. I know you and Tom must be overwhelmed. The frustrating thing is the waiting and the anticipation of things that may or may not happen. I appreciate your thoughts on going ahead with the Whipple. In my opinion, surgery and the drainage bag would be a much better option. I’ve gotten used to my drainage bags. I know Tom would adjust.
I agree with Lainy. How can it be a recurrence if the biopsies are negative? I always thought biopsies were the gold standard for a diagnosis. That just doesn’t make sense to me. I think the elevated CA19-9 can sometimes occur with inflammation and doesn’t always mean the cancer has returned.
Hang in there and try to only put one foot in front of the other and not look too far ahead (easier said than done – I know).
Sending you and Tom a big hug. Hope Tom is feeling better soon and out of the hospital.
BetsyJune 21, 2011 at 10:18 pm #51065karenMember
Holding you and Tom in prayer. Sending healing energies.
KarenJune 21, 2011 at 9:10 pm #51066
Mary…….not the news I have wanted to hear. But, then I am holding out hope that Tom will continue to prove us wrong as he has done many times before. I know that his CA19-9’s have been rising for some years now but, scans and symptoms did not point to disease progression.
Fingers are crossed for this puzzle to be solved in the most positive way possible.
All my best wishes,
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