5 years post diagnosis… but bad news…

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. Mary

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, Mary