marylloyd

Hi friends,
I can’t believe it’s been so long since posting. We’re still hanging in there! Tom has actually been feeling much better the past 10 days or so. His fluid problems have been solved with stenting and medication. His appetite has improved, but he has lost enough weight that he looks gaunt. He’s on a steroid that helps the nausea and obviously helps his appetite. I give the Docs a lot of credit here. They jumped right in and handled all of his crisis situations, some preemptively and he is doing pretty well considering all he has been through. The news is now that we are back at the hospital for him to have a biopsy done so that he can be part of a clinical trial that OSU and MD Anderson are doing jointly. It is a drug called MK-2206. This is the second phase of the study. If he qualifies then he will start on Sept. 13th. The results of the first phase are posted on line. You can just plug in MK-2206 and it should come up. I actually haven’t read it myself! It is a targeted therapy that affects the protein of the cancer cells and stops their growth and hopefully will result in remission. I hope all goes well so that hecan take part. They have to get the results of this biopsy and he has to have bloodwork next Tues and if all is well then he will be on it. I have to go so I’ll keep in touch, Love Mary

Hi Friends,
Today is Tom’s third day home after a lot of “repairs” done on him in the hospital. He feels that he has been tuned up and is ready for another few thousand miles! He had a stent placed in his vena cava. It was being depressed by the duodenal swelling and that was causing the fluid buildup in his legs and belly. That is improving every day so it’s obviously working. He had a stent placed in his duodenum to keep that open so he can eat, although like everyone else he doesn’t care about food. His diet is restricted too so there are things that he wants that he can’t have. He had a new external drain placed in his liver so that is still uncomfortable but seems to be getting better every day too. All in all he is improving, he’s getting grouchy so thats a good sign. He’s frustrated because he sees so much that needs to be done and he can’t do it. He expects everyone to get at things and we all have a different schedule and different priorities. I had to tell him to give me a break the other night. I was exhausted from all of my “chores” and he was getting a little irritated about something and I had enough. I try to be patient and not get irritated myself but like I told him I can’t help what’s happening to him. If I could do something about it I would in a heartbeat but I can’t. We’re just all doing the best we can with the cards we’ve been dealt! He’s always been a great patient and I don’t blame him for getting grouchy. I would be a real pain if it was me! Anyway, I appreciate everyone’s thoughts and prayers and support. I feel a little better about things since he has stabilized but I know we have a tough road ahead. Hopefully he’ll be able to start chemo in about ten days or so. His bloodwork has been good, they’re mainly worried about the swelling in his feet and legs and that is getting better. Thanks again, I’ll stay in touch. Love, Mary

Hi friends,
A lot has happened since my last posting. They changed his drainage tubing the day that I posted. Unfortunately it started leaking the next day, worse than before. They brought him in for a cat scan on Fri (the 16th) to see what was happening. Nothing was found but Tom felt so weak and miserable that they ended up admitting him. That night he vomitted up blood. His hemoglobin was so low they gave him 4 units of blood the next day then scoped his stomach on Sun and found that he had 3 esophageal varices( like vericose veins) and one was leaking blood. This can be extremely dangerous if they would give way, like an aneuyrism. On Tues they banded the varices (with rubber bands) and kept him until Thurs night when our Doc wanted him discharged to start chemo on Fri. Everyone basically said that was crazy and when we showed up for his chemo appointment the nurse sent him back to the hospital to be readmitted. He was feeling terrible and his blood count was still very low. Anyway they felt he was stable on Sat and sent him home and yesterday he started swelling up like a balloon. His belly was swollen when I picked him up Sat but now his legs and ankles are twice their normal size and he is belching like crazy! I called the on call doc on Sun and they didn’t seem too concerned so today I told Tom to call and tell them how bad he feels and belch on the phone the whole time he’s talking to them. He’s on a huge dose of Nexium and I can’t imagine why he would have so much gas! I do worry about it damaging his liver or kidneys! Anyway every time he has a complaint now they blame it on the cancer, even his fatigue which ended up being internal bleeding. It’s very frustrating. I don’t think the cancer has progressed to the point of causing all of these issues. It’s barely even visible on the scans. We have an appointment on Thurs with the medical oncologist to see if he can start chemo. If it was me I would probably throw all of the meds out and refuse chemo but he wants to try. Hopefully it will help but I doubt that he will be able to get started because of all of these other issues. Oh and his drain did not leak the entire time he was in the hospital and now it’s leaking again! Go figure! I feel terrible for him. I wish there was something I could do but I’m getting really burned out. I guess we all just do our best. Thanks for listening and I’ll stay in touch. If anyone has any experience with swelling like this, ecspecially related to meds please let me know. Take care, Mary

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

Lainy,
By what I’ve read the duodenum is tied to the pancreas in such a way that they can’t really just take it out. They would take part of the pancreas and stomach too. I don’t know. This is all pretty new and we haven’t had much time to question things. He still would need a stent because of the stricture in his liver. That is what has been causing all of his infection issues. Tom is 63. He’s been very healthy most of the time. This past year has really taken a toll on him but I think his survival rate would be quite high because he is physically strong-at least when he isn’t battling these crazy infections and taking nasty antibiotics. He was on Augmentin which we quit right after reading Scragots post last week. Lainey, if he doesn’t have the surgery he would end up like Kris and some of the others that were unable to eat and vomiting blood etc. because his duodenum would completely close up and food could not go through. He’d have to have feeding tubes and God knows what, I can’t imagine him going through that. I would rather see him get a severe infection and go quickly then starve to death. I still hope that it really isn’t cancer but what are the odds of that. His tumor markers have been sky high for a long time and they were just waiting to see where it would pop up. Anyway, I appreciate your concern. Believe me nothing will happen too quickly. Dr. Bloomston is being very cautious. He’s been with us since day one and we really do trust him. I’ll keep in touch. Mary