October 12, 2014 at 6:23 pm #53583gavinModerator
Thanks for posting and the update on how Ben is doing, or King Ben should I say! Laughter is such a good thing and if you can find it in any situation then I say good for you both! My dad used to laugh a lot no matter what was going on and I so know how laughter can help lift everyone’s mood no matter what is going on.
Your onc is so right about Ben being such a fighter and you guys have been through so much with everything. That’s great that he is doing so much better than you thought and I am so hoping that he continues to improve as well. And yes, so agree that getting to grips with the pain is so important.
My best to you and Ben,
GavinOctober 12, 2014 at 2:49 am #53582marionsModerator
A few weeks back, a lady I greatly admire spoke these simple but poignant words: “I have been dealt a lemon and I am teaching my children how to make lemonade.” Her words resonate in today’s posting. You have adapted extremely well and knowing of King Ben’s resilience, a release from hospice is not out of the question. Your emotions are all over the place (it is bound to be) and a good laughter is always welcome. We learn to enjoy the simple pleasures of smelling the air, watching the birds fly by and taking in the wonders of life realizing that each day is meant to enjoy the beauty around us.
You and our King Ben possess enormous resilience and strength and there is no doubt in my mind that it will continue to guide you throughout.
Walker, commode and wheelchair will need an occasional dusting!!!!
Hugs and love,
MarionOctober 12, 2014 at 12:38 am #53581
Oh, Tom, beautifully posted and I want to laugh and cry at the same time. At least if this is a trial run w/ Hospice and Ben goes back for chemo, you both would be relaxed again if you have to call Hospice in. We learn so much with this CC, sometimes I think we feel like Meidcal Pros.
I am glad you remembered what I had said and BTW Teddy never used his commode either. I don’t feel anything is scary once we know what is happening and that is why Teddy and I talked constantly about his CC, what was happening and very often to joke about things. Not sure why but neither of us were scared, honestly. Guess we really wanted to make the most of what ever time was left and one cannot do that stressed, nervous and scared. When a new Hospice Nurse would come in T would tell her that we were on our honeymoon. He would still amble in to the kitchen with his walker and ask me to dance while he sang our song. That was the toughest, kid.
I am right with you guys and hoping for the best. Thanks for the update Tom, guess you are still afraid of the wet noodles!October 11, 2014 at 11:58 pm #53580
Where does the time go….
The last time I posted Ben was just coming up on 3 weeks in the hospital and was going to be released under Hospice care (hospice – such a scary word isn’t it?). Ben was released on Tuesday, September 23rd, and I was as nervous a mouse hiding in a garden of catnip.
I remember reading all of Lainy’s posts years ago about Hospice and how wonderful they are, and I will say they have made the whole transition so much easier. The first week was definitely “trying” for me physically and emotionally – getting all the equipment (bed, wheelchair, oxygen, meds)- but Hospice really takes care of everything and it was amazing how quickly they had everything delivered (I called them Tuesday morning and all necessary equipment was there Tuesday afternoon).
The first few nights were nerve-wracking – going from hospital 24×7 care to….me. Ugh. However, when Ben was released he actually was in decent shape – while he had a biliary bag to drain the ascites/bile that seemed to be pooling in his liver and a pleurex to take care of overflow in the lung, he pretty much was able to get around on his own with a little help. (To this day the wheelchair, bedside commode and walker are still in the garage)!
The nice thing about being out of the hospital is SLEEP! I’m still amazed at the number of interruptions that occur in a hospital- I realize that doctors and nurses and food and vitals and meds, etc. need to be administered – but I’m quite appalled at the number of times patients are awoken for somewhat minor things. ( i actually tracked it one morning and in a 2 hour time span I think I documented 11 interruptions)!!!
Anyway -once at home, Ben regained strength pretty quickly in a few days….he could get up and walk around (briefly) with just a bit of assistance. The first Saturday he was home he was feeling so well he did a walk around the outside of the house to critique the yard work….he kind of over-did it and ended up in pretty severe pain that night which we made the mistake of not getting in front of earlier. So – I spent a sleepless night on the phone with Hospice nurses administering morphine by mouth, etc as he was having severe pain and respiratory distress. Needless to say I was scared *&*@less. We learned our lesson – DON’T try to be TOUGH! Get in front of the pain, once you get behind it it takes so much to get it under control (just like the hospice nurse said). If you get one thing from this post – STAY AHEAD OF THE PAIN!
The two weeks since that event has been mostly uneventful. While Ben sleeps a lot – A LOT! He is actually in very little pain these days, just maybe one pain pill a day. He is still draining bile/ascites into his bile bag, some days more, some days less (i’ve calculated on “heavy” days it’s about 50cc’s per hour, and on “light” days he can go almost 24 hours and get 300cc). I haven’t made any correlation yet.
I was happy that our GI/Oncologist from MD Anderson called me personally two weeks ago to check on Ben, she said he was such a fighter – and she hadn’t given up and was still hoping he might be able to go back to the battle with Chemo again. His local oncologist called me last week and he said if he stays stable and gets his strength back and gets bored – we should consider chemo.
I’m not really sure how all that will play out. His last few rounds of chemo had really completely worn him down and that’s when the infection started – however, just sitting around at home watching the bile flow doesn’t seem like a great alternative. I know Ben doesn’t like it one bit that nothing is happening – so, I wouldn’t be surprised if he might find his way to another chemo treatment – but to do that we would have to come off hospice at least “temporarily”. (Hospice really is a great option…I won’t go into detail now, but it really can be the best of both worlds, a much better option than a nursing home and certainly better than a hospital…and it doesn’t mean that you will be dying in a few days which is what most people think).
So, that’s my long ramble for the moment. Meanwhile, Ben is hanging in there, and honestly doing much better than I expected. We have some happy moments, sad moments, loving moments and a little laugh here and there (just like Marion and Lainy had assured me). I work for a great company and I have been working from home full time (luckily enabled by amazing technology) so I can still be productive and keep an eye on the King! (that’s our friends nickname for him – King Ben!)!
Thanks for listening.
TomSeptember 22, 2014 at 3:42 pm #53579
Tom….yes, that is the good news….that there are a lot of posts over a long time. I have to laugh…..we are similar in regard to the posting of LONG posts. I just seem to have a problem condensing things. Why use 3 words when you can use 30? Right? I figure the more I explain, the less questions there are. )))September 22, 2014 at 3:09 am #53578
I guess the good news Julie is that Ben has been around so long that there is so much to read!! And while I don’t post often, when I do I can get kind of wordy….September 22, 2014 at 2:48 am #53577
Tom…yes indeed, I had read an old post of yours about poo…had been reading through a lot of old posts you had, got off track and didn’t pay attention to what I was doing. Glad it did let you laugh a little.
Wrapping my arms around you and Ben both…..with a prayer.
JulieSeptember 22, 2014 at 2:23 am #53576
My dear Tom, I am glad Ben is coming home that is the best place to be. If I may suggest to you some Hospice suggestions. I ordered a hospital bed for Teddy as it is easier for the patient to get in and out of and more comfortable. With this bed I would get a lambs wool sheet as it makes laying in the bed more comfortable. I also ordered a walker and wheelchair as we moved along. I remember a lot of times when I would be at the kitchen sink T would come up to me and give a hug. After I ordered the walker he kind of stumbled in to the kitchen without the walker and I gave him a Lainy look and said if you fall we will really have problems. He just looked at me with his arms out and said I just wanted to dance with you and he began singing our song and trying to dance with me. I have a million memories like this. This will be time now for the 2 of you and like T would say we were on our honeymoon. Sorry, I digressed. Sooo I put the Hospital bed in the living room as it was light and airy there and visitors felt comfortable as well. But the most important thing was the BIG TV was in there too. Hospice is wonderful as they allow you and Ben to have this precious time together. Best of luck and I wish for Ben to be comfortable. Love you both.September 22, 2014 at 12:29 am #53575darlaParticipant
Thanks for the update and all the positive news about Ben. Glad he has improved and yes, stable is a good thing. Good to hear you have some help & support in his brothers. Hoping you can get him home soon. He will be in good hands with all of you and hospice to keep him comfortable. More good thoughts and positive vibes heading your way.
Love & Hugs,
DarlaSeptember 21, 2014 at 10:46 pm #53574
Hello everyone. Thanks for all your support. This board is as amazing as ever. Julie, you must have read an old update if mine from a couple years ago…but rembering the “praying for poop” comment again did make me laugh. Ben has been on lactulose for a couple years to help control ammoniaevs so pooping is never a problem these days.
Things are a little better since my last post. Ben had a chest tube put in a week ago for lung drainage, and that went to minimal flow and they took that out today and replaced it with a pleurex (small drain that we can suction out a few times a week). His pain had been pretty and from that chest tube so with that gone his pai level has gone down significantly and he hasn’t had any pain meds for the last 12 hours which is good news as he can get pretty loopy.
Fluid output from his biliary drain hasn’t abated. He put out 3600 ml yesterday. They are giving him 2400 ml through IV per day and he drinks a lot of water. Today, his GI doctor is cutting in IV in half to see how he reacts to that so at least it will help stem the constant output (which has reduced now), but as he said it’s all a balancing act.
I met with home hospice today. We are trying to take him home by mid-week. I was worried that hospice wouldn’t provide IV fluids or antibiotics but was assured that hospice care has changed over the years, and while the goal is palliative care they will do some additional care to ensure comfort.
Ben is pretty good, he went for a walk today and his appetite is still there so he’s eating as well. He does say he feels muscle cramping but with all the fluids in and out they is likely some imbalance that I’m going to follow up on.
Bens two brothers are here to help out so I get some time away from the hospital. Yesterday I actually watched half a movie and took a little nap. So that was good.
So that’s the “stable” news for now. Thanks again for all the love, support, positive vibes, etc. Luckily because of this board, I’ve always known what to expect so I wouldn’t be surprised. I can’t say it makes this phase any less sad, but I’m prepared and I feel the knowledge allows me to make much better decisions.
TomSeptember 20, 2014 at 7:28 pm #53573
Tom, “Praying for poop,” reminds me of the time when my dad had cancer and his kidneys were failing We were “praying for pee.” So glad to hear that Ben is home. Hang in there.
Julie T.September 20, 2014 at 6:44 pm #53572gavinModerator
Real sorry to hear this latest news about Ben. Please do not give up hope. As you say, Ben has bounced back before and so hoping that this is the case again for him. Will keep my fingers crossed for you both and sending loads of positive thoughts over your way as well. And of course, you know we are here with you.
My best to you and Ben,
GavinSeptember 20, 2014 at 3:06 am #53571
Tom, I’m with Lainy…..would like to swear too Sometimes the uncertainty of this cancer is worse than the treatments for the cancer. If I could, I would wrap my arms around both of you and give you all the strength I have right now, if it would help. My heart and prayers are with you and Ben right now……..for hope and healing.
Julie T.September 20, 2014 at 12:28 am #53570malinger2Participant
Sending positive thoughts and energy to you both.September 19, 2014 at 9:06 pm #53569
Tom, this is not what I ever wanted to hear but let’s not count anything out yet. The important thing is you will be very strong and you have this whole huge cheerleading team behind you both.
I would just like to raging swear but will remain a lady. We just love you guys so much and I am standing right beside you for strength and support. I do know what you are feeling but try to be strong for Ben. Please, please keep us updated if you can.
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