September 19, 2014 at 4:13 pm #53568darlaSpectator
Thinking of you and Ben. Hoping things improve.
Love & Hugs,
DarlaSeptember 19, 2014 at 3:43 pm #53567
Oh, Tom…..my heart is heavy for you. May Ben have the comfort he deserves and may love surround you in this most precious time. Please know that we are with you – all the way – and that a tidal wave of love is heading your way. Can you feel it?
MarionSeptember 19, 2014 at 2:26 pm #53566
It’s definitely not getting better for Ben unfortunately. The GI doctors say all the fluid is ascites, which I know is common from reading this board, it just wasn’t as evident early on I guess. His drainage is increasing at an alarming rate, yesterday was 3 L and the doctors say there really isn’t anyway to stop it. Still waiting to hear from MD Anderson but I’m not hopeful at this point. Ben has fought this for so long and we haven’t given up as he’s bounced back before, but I will say it’s not looking good at all.
I wish I had better news.
TomSeptember 18, 2014 at 5:27 am #53565
Tom……I am wondering (that could be a mistake!) but Ben had also been treated for Lymphoma. Could there be a connection – liver and lung? Perhaps the pharma companies have some data stored re: drug interaction or possible long term after affects. Problem is they don’t respond well to questions posed by non-professionals, but they will speak with the physicians.
Give Ben a hug from us all and keep one for yourself as well, dear Tom.
Fingers crossed on this end and wishing for a quick turn-around.
MarionSeptember 18, 2014 at 2:56 am #53564lainySpectator
Tom, so sorry Ben is still suffering from fluids no matter what kind. I know how you feel as I was so in awe of Teddy and his attitude. He was only about 5’5″ but in my eyes stood about 6′. What an attitude and when I would ask him how he did it he would say, “I was trained by the best”. What a mind of steel. Ben seems to be the same way and I think a lot of it is they are trying to make things easier for us. But the stronger they act it really does help us get through. 15 days now! WOW! Think you should buy him a present for each day!!! Please keep on keeping is posted and I think it a smart move to send things to MDA as they also know Ben well. I always feel a different set of eyes may see things differently. Sending my love too you. Hope T is not getting angry as I love so many men on here!September 18, 2014 at 2:03 am #53563
Here we are at Day 15 in the hospital – a new record! (Well at least for Ben anyway).
Since I posted last (when I had to return from home from the family wedding), Ben had a lot of fluid collecting in his lung at an alarming rate. The doctors decided to put in a chest tube to drain the fluid to be analyzed – and they drained a LOT! (if i recall about 2000 ml). The procedure itself didn’t take long – but he now has another drain (with suction) that’s not so much fun. That was on Monday, 9/15 and at this point there isn’t much draining from the lung. At least he was released from ICU the next day back to his “home” floor at the hospital.
Where it gets interesting is that his hepatic drain in the liver continues to drain bile – and lots of it! I believe he is somewhere in the 2000ml per day on that (I will confirm).
Our local GI doctor is perplexed and he reached out to the team at MD Anderson to get their view and they also said they had never heard of the current situation – which originally the GI doc thought was a biloma or abscess but he’s saying the fluid seems to be surrounding the liver (and they do believe that’s some of what was going into the lung).
At least for now Ben is stable – he feels “ok”, just on a lot of pain meds from the chest tube, but he is up and about from his bed (well at least up and over to the commode) but I’ll take it. I’m amazed at his strength and will to keep moving forward.
Meanwhile, I sent all of his scans to MD Anderson for the interventional radiology team to review to find out if they see something the local IR team missed. The team of doctors caring for Ben both locally and at MD are diligent about helping him out.
Ironically – except for looking tired, Ben still looks pretty healthy; he seems to be unique at every turn, and at 4 years – 4 years – 4 years (I can’t believe it), with no transplant or resection – just chemo….he’s truly amazing.
I’m so tired but when I look at Ben and his stubborn WILL, I can’t help but continue on – it’s truly inspiring.
tomSeptember 15, 2014 at 6:19 pm #53562gavinModerator
Sorry to hear this latest news about Ben. Grrrrrr to fluid on the lungs! Hoping that Ben’s med team can get to the root cause of this issue and do something about the cause of it and not just drain it away. Good idea contacting MD Anderson for their thoughts on this and please let us know how you get on with that.
Glad that you were at least able to enjoy some of your trip and my fingers are crossed for Ben.
My best to you both,
GavinSeptember 15, 2014 at 2:53 am #53561
Tom….Hang in there. Ben may very well respond to the antibiotics at which time the bile leakage may be lessened as well. Fingers and everything crossed on this end.
MarionSeptember 15, 2014 at 12:23 am #53560iowagirlMember
Tom, Your tag line says, “Don’t give up,” and I know that you won’t. At least they have found the infections and have something with which to treat them. I’m glad they put Ben in ICU, even as a precaution. Good move on contacting the GI oncologist at MD Anderson.
I’m so glad to hear that you were able to take part in at least some of the festivities of the wedding . As much as you were concerned about Ben, it’s important that you find some time for yourself as well. It isn’t being selfish.
I will say a prayer that Ben’s doctors gain some clarity in what is going on with him….why the bile is backing up and why the infections.
Hugs from Iowa….Julie T.September 14, 2014 at 10:04 pm #53559lainySpectator
Aw, Tom, so sorry and I just posted on your other post about your trip. At least you got to see family albeit quickly! I have no advise for you on this one. All I can do is wish the best for Ben. My thoughts and good vibes with the best juju are all going out to you both! You know the drill…please keep us informed.September 14, 2014 at 9:30 pm #53558
Thanks everyone for all the support! Unfortunately, I couldn’t make the whole trip or the wedding as Ben had a bit of a turn. I was able to get back home for two days and I was fortunate enough to get to see the prenuptial practice and had the pre-nup dinner so it wasn’t a total loss.
As for Ben, he had his lung drained of fluid on Thursday night, they got about 450ml and sent it off for testing. On Friday they did an ERCP to see what was causing the bile “pooling” it he liver (that he now has an external drain to drain that). After the ERCP he had labored breathing so they sent him to ICU as a precaution where he remains today (Sunday).
I met with the GI doctor today, they saw no blockage in the bile duct so he didn’t need a new stent, but he is a bit perplexed as to what is causing this bile to pool up in his liver. Interestingly, his liver panel is normal with his bilirubin at 1.0. I did tell him from reading this board I understand that sometimes leakages seem to occur without an always apparent cause. They do show an infection in the bile (enterococcus faecalis) and they just received an indication of a yeast infection in the lung fluid (specific strain yet to be identified).
He is on piperacillon and tazobactam along with myacamine for the yeast infection.
I am definitely starting to get worried now that he is coming on two weeks in the hospital and they still don’t know what’s causing all of this (well obviously the cancer but no specifics) and these infections are quite bothersome. But, I know so many people have dealt with similar issues here over and over and they seem to come through, although I also know infections are a constant battle that doesn’t always turn out so well.
I’m contacting our GI Oncologist at MD Anderson tomorrow to consult with our local GI doctor to see if they may have any insights as well.
TomSeptember 12, 2014 at 2:43 am #53557iowagirlMember
Tom….I’m very proud of you for making the decision. It was yours to make…but I know it was difficult. As the “patient” in my relationship with my husband, my “caretaker”, I have been encouraging him to go off for his bike rides or other activities….when I was sitting in my recliner , out of it from the latest chemo. I knew that I just had to sleep it off….and him being here wasn’t going to change anything. He needed some time to himself…..or with his friends with whom he goes to lunch a couple days a week. In short, he needed breaks from ME….from the intensity of the situation and he has always come back looking a little more refreshed.
I don’t know when your flight went over eastern Iowa…..but I am giving a little wave. I have relatives up by Emmetsburg, so am familiar with the area to some extent. Enjoy your family and visit…..and the wedding…..without guilt. Go with love in your heart…..and know that by going, you will return to Ben, clearer headed and refreshed. It will be good for both of you.
Iowa GirlSeptember 11, 2014 at 5:15 pm #53556gavinModerator
You def need a break and I so know what you mean about the guilt thing. Try not to feel too guilty if you can as I know that up till now you have done an amazing job here! And as you say, if need be you can always jump back on the plane again.
My best to you and Ben,
GavinSeptember 11, 2014 at 4:57 pm #53555malinger2Spectator
Tom, I think you and Ben have touched the hearts of many people fighting the good fight, or supporting those who are currently faced with the cc challenge. Enjoy every minute of your stay at home. Your decision took a lot of courage but I think it was definitely the right one. Peace…love…hope.
MelindaSeptember 11, 2014 at 4:40 pm #53554darlaSpectator
Tom, I’m glad you made this decision. I know it was a hard thing to do, but you do need and deserve a little time for you. I’m sure that Ben will be well taken care of in your absence. Safe travels and enjoy. Both you & Ben are in my thoughts.
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