December 30, 2014 at 1:19 am #53598middlesister1Moderator
I am very sorry to hear, but thankful that Ben was able to come home for Christmas. Your journey with Ben living life to the fullest with CC for over 4 years and the love and compassion you shared is inspirational to others.
Take care of yourself,
CatherineDecember 29, 2014 at 1:11 am #53597
Thank you for sharing this with all of us. I am so sorry for your loss, but am also relieved that Ben is no longer suffering and that his passing was calm and peaceful and he was kept comfortable throughout.
Yes Ben was strong, but your strength in all of this also shows through. Your love for him can be felt through all you have posted.
You and all who loved and cared for him have my deepest sympathy. I know that knowing that he is no longer suffering and in pain does not make it any easier for you, but try to stay strong and kept him with you forever in your heart and the wonderful memories of the life that you shared.
Thinking of you and sharing your sadness. Take care and come back here often. We are all here for you to help and support you in any way that we can.
Love & Hugs,
DarlaDecember 29, 2014 at 12:53 am #53596
Dearest Tom, I am so relieved that the end of Ben’s Journey was just the way you both wanted it to be. I think I had told you how wonderful Teddy had looked at the end, one would never know he had been so very sick. I swear you have read this before but I swear that in time the wonderful memories will overtake nightmare of what he went through and only good memories will remain.
Do not stand at my grave and weep;
I am not there. I do not sleep.
I am a thousand winds that blow.
I am the diamond glints on snow.
I am the sunlight on ripened grain.
I am the gentle autumn’s rain,
When you awaken in the morning’s hush,
I am the swift uplifting rush
Of quiet birds in circled flight.
I am the soft stars that shine at night.
Do not stand at my grave and cry;
I am not there. I did not die. By Mary Elizabeth Frye
For everything beautiful that you see
will bring a memory of me.December 29, 2014 at 12:20 am #53595
So now is the update I never wanted to write.
Ben passed away on Friday, December 26th at 10:15 pm at home.
Ben was released from the hospital under 24×7 hospice care on Christmas Eve – how is that for a present under your tree? (which coincidentally – his bed was right next to the tree). He had been declining pretty quickly since his admittance to the hospital – so by the time he was home he wasn’t his usual self. Luckily we don’t live far from the hospital so the ambulance ride to the house wasn’t too upsetting (although I didn’t ride in the ambulance – just the process of moving and loading and unloading can be stressful – so if anyone has to do that – make sure there are pain meds given right before departure).
Christmas Day was somewhat uneventful with a few friends stopping by to see him and say goodbye. One of our closest friends arranged for the Priest from the Episcopalian Church Ben wanted his service in to stop by and perform last rites – with a few of our closest friends. While I can’t say I’m the religious type – it was quite calming and peaceful (and I know Ben wanted that).
I talked with Ben a lot that day, holding his hand sitting at his bedside. He didn’t really say much – but he ALWAYS knew when I was at his side – it was quite remarkable. He knew when I held his hand, he knew when I touched him – he knew when I kissed him (which I think i was up to about 1,000,000 times). The nurses even commented that as soon as I was near and he could hear my voice – his body language changed. Hearing is the last to go – so talking was calming and reassuring.
The day after Christmas Ben’s breathing became more labored, his hospice case management nurse (who has been with us since the beginning of hospice three months ago) stopped for a visit to see how the crisis care hospice nurse was doing and to check on Ben. She noticed that he seemed in a bit more distress – we talked and she decided to double his morphine to 10mg per hour vs. the 5mg (with direction from the doctor). I emphasized that whatever it took for him to be in no pain or distress – and to go as quickly as possible was the goal. Ben’s biggest fear was to linger.
Later that day I had 4 of our closest friends over in the afternoon – where we sat outside, laughed, cried and took turns checking on Ben.
When the last person left about 9:30 PM, I went and sat next to Ben at his bedside (if there had been room I would have crawled in next to him – I wish I had ordered the bigger bed now). I held his hand, hugged him, kissed him and told him we were all ready for him to no longer suffer and we were ok for him to go.
I talked to the nurse and asked what she thought of how long he might last (which of course nobody really knows), but he wasn’t yet showing all the classic signs of someone moments from death.
I got up from the bed and told the nurse I was going to get ready for bed and I would be out to help her turn bed over to his other side. Moments later she knocked on the door of my bedroom and said ” you need to come out – it’s time”. I was definitely not expecting that. She said his breathing changed immediately after I left the room.
I sat next to Ben, held his hand, hugged him, kissed him and said goodbye until he took his last breath. It was the most beautiful and peaceful thing I have ever experienced.
I am only going through the details here because I thought I would be a complete mess when the time came. I wasn’t sure if I wanted to be next to him, but I always knew- even though he never said it, that he wanted me by his side when he went. My point is – while I thought I would be a mess, it turned out to be something I will treasure forever and never forget. Being there at his side at the time gave me an incredible sense of calm and peace and I will be forever grateful that I was there at his side, next to the christmas tree in our beautiful home.
Ben had enormous strength and courage through his 4 years – he rarely complained and just moved on from day to day. He didn’t like me sharing too much information to anyone outside our closest circle (and rarely anything on Facebook), as he didn’t want the sympathy- I’m not sure I would choose that path but that was his wish.
I am so grateful for this board and the 4 years and 4 months that I have leveraged the research, the shoulders to cry on and the experiences of others to help us in this journey. I am humbled by the moderators that dedicate so much of their time ensuring that we all have the support and resources we need. It’s the epitome of selflessness.
Thank you all. Love to you all. Strength to everyone.
p.s. If I can help anyone with anything feel free to send me an email. It’s been a long journey – hopefully more of the patients will have the same opportunity to fight as long as Ben.December 25, 2014 at 5:30 am #53594dukenukemMember
I hope that when it is time for Aimee and I to have that talk we can have it with the care and loving and grace that you and Ben have.
DukeDecember 24, 2014 at 6:57 pm #53593malinger2Participant
Tom and Ben…what a blessing you have been to each other and to the rest of us who have received messages of hope from you over the years. I am glad that you will be at home and that you are at peace with your difficult decision. I will include you in my prayers at Midnight Mass tonight.
Love and strength to you both.
Melinda ADecember 24, 2014 at 6:35 pm #53592hamptonsarasotaMember
Very sorry to hear this. Growing up in Ft. Lauderdale, I know the boat parade was always entertaining and beautiful. Glad to hear that Ben was able to see it this year. All my best to both of you in this most difficult of times….December 24, 2014 at 3:37 pm #53591
Tom & Ben,
I am so sorry to hear that it has come to this. Know that I am thinking of you both and hoping that you are able to have some special time together and that Ben’s pain can be kept under control. Please let us know how things are going when you can. We are here for you.
DarlaDecember 24, 2014 at 9:21 am #53590middlesister1Moderator
Like Julie, I have read your posts and the love and dedication come through the pages. I know whatever time you and Ben have together will continue to be special and I hope peaceful and pain free.
CatherineDecember 24, 2014 at 5:58 am #53589iowagirlMember
Tom and Ben….I’ve read most of your story and am so impressed by the caring and compassion you have for each other. You haven’t let CC completely stop you from living your lives. May God let you have these days ahead with the least amount of pain and the most amount of love. Home is indeed where you need to be….with each other. Many hugs to you both….and prayers.
Julie T.December 24, 2014 at 4:20 am #53588
My Dear Tom and Ben, I have no words this time except to say you have both dealt with this nightmare journey with such dignity and grace. You did everything just right and you so remind me of Teddy and me as we talked things out as you have. With you both agreeing on the Hospice, you both have acknowledged the end of the journey thereby giving each other the release that you need. I just pray that Ben’s pain is kept at a minimum and just stay close showing all your love. We are all here should you need us. I love you both.December 24, 2014 at 3:58 am #53587
I will say it’s never boring with Ben and CC. After making it through Thanksgiving, we had some relatives visit and geared up for our big party for the annual Boat Parade here in Fort Lauderdale on December 13th. My mom and sister and niece came into town to help me prepare, and we had a great party with almost 50 friends and neighbors. I was nervous to the end and was willing to cancel at the last minute if Ben wasn’t up for it. He was a real trooper, and slept until 5:00 and was ready just in time.
The party took a lot out of Ben and he was tired the next few days but I know he enjoyed himself. His birthday was this past Friday, 12/19. I didn’t plan anything since we had such a great time the prior week, and I knew he wasn’t feeling well. He did get up late in the day and we watched the sunset in our beautiful backyard while he sipped sparkling cider and I sipped champagne. I made him his favorite meal – chicken bow tie pasta with tomatoes and basil, watched some TV and went to bed. It was a great night.
At 4:00am, Ben was standing in our bedroom holding the tubing for his bile drain. Apparently he accidentally pulled it out while he was sleeping. I called hospice and they told us to go to the emergency room. Unfortunately since it was a weekend there wasn’t anyone around to place it in. Ben was checked into the hospital until they could take care of it. Ben’s pain had already been increasing throughout the week, but this caused it to get worse. Luckily the hospital has been able to manage his pain with frequent doses of morphine.
Unfortunately, on Monday when Ben was scanned and we consulted with the interventional radiologists they said that there wasn’t much fluid pooling around that area. I asked how he could be draining 1,000 to 1,500 CCs per day and now there is no pooling. They did say it takes the path of least resistance and was likely going down the bile duct, behind his liver and his back – but they couldn’t risk putting the drain back in because there wasn’t enough fluid built up in one place to be safe. The dr in charge of hospice agreed. A parecentisis might have been possible but there wasn’t enough buildup in the stomach yet, but meanwhile I can se his stomach grow larger. Meanwhile the pain continued to build, but was still managed.
In the end, there were no good options, and at this point no option changes the ultimate outcome. Ben has come to terms with his fate and just wants things to be done. Hospice did give us the option to stay in the hospital, go to their care facility (both of which could help with procedures if necessary), or go home under 24×7 hospice care where his pain will be managed.
This morning we had the talk that broke my heart. Ben said “he was ready to go to heaven if I was ready to let him go”. So, we decided dedicated hospice at home was the best choice for him now. They gave us 24 hours to ensure that’s what we want, and right now we are prepared to return home on Christmas Eve. Home, right where we need to be.
All my best to all of you.
TomDecember 9, 2014 at 7:07 pm #53586
To my Favorite Tom and Ben, I am so very proud of the 2 of you as you both have done everything exactly right and you have done it all with grace and dignity. Grace and dignity, that is another awesome duo! I wish for you both to have a great Holiday Season making the best of good Memories! I am sorry that Ben is getting pain and it must be kept under control. Teddy was on Morph and it worked very well for him. Keep your spirits light and bright and enjoy each day to the fullest even if it is just to sit and talk. You know you are both loved so very much!December 8, 2014 at 2:05 am #53585
So good to hear from you and Ben. Sorry to hear of the turn things have taken, but it sounds like you both are dealing with it all as well as you can. Glad you were able to have a nice Thanksgiving and are looking forward to the rest of the holidays, Ben’s birthday and the boat parade. Yes, just live for today. Tomorrow will come and there is nothing we can do about it. Who knows what tomorrow will bring. Just enjoy every day and make the best of it all. Just take it one day at a time.
Know that I am thinking of you both. Stay strong and remember we are all here for you to help and support you in any way that we can. Please update us on how things are going when you can.
Lots of love and hugs for both of you.
DarlaDecember 8, 2014 at 12:52 am #53584
Here I am almost two months (again), since my last post. I don’t know where it will go but I will try to be brief (famous last words).
Ben is still hanging in there. He’s the most stubborn man I know and it’s amazing at times that even now he seems to just refuse to believe he has cancer and is at home on hospice. (Well he gets it but doesn’t dwell on it). We just try to live our life day to day as usual (although he sleeps a lot). He still has good days where we take a drive, go shopping, get cranky, argue – then move on to the next day.
Ben still has his biliary drain and his lung drain (although we don’t use the lung drain – it’s just a “leftover” from the hospital). He still drains at least 1000cc’s a day from his biliary drain . While he wants his tubes OUT, there really is no way given the amount of drainage. He did have a CT scan a month ago to see if the lung drain could come out – but that gets complicated with insurance while on hospice, and in the end wasn’t worth the trouble given the biliary drain can’t come out. The scan also showed increased activity in his stomach – which wasn’t a surprise, it kind of validated some of his increased pain.
We did consult with MD Anderson one more time (via phone), and they agreed there really isn’t much to do about the biliary drain. They did say they might consider a low dose of Gemzar for Ben (since he is tired of sitting at home “waiting to die”), but in the end – I know Ben doesn’t want more chemo.
Meanwhile, Hospice has been great. It’s kept Ben out of the hospital – he had one infection about a month ago which typically would send him to the hospital for 5 days…but we managed it at home with antibiotics from hospice and he’s been ok ever since.
His pain does seem to be increasing little by little – especially in his stomach. Oxycodone at the right intervals seems to help – but when it gets the best of him – the pain can get ugly and I administer Morphine orally. That’s only happened a few times, but hospice nurses have given guidance along the way (and they come over any time night or day if necessary). At this point though, they still generally come once a week to check in – and once in a while if I call with support for pain management.
That’s all for now – I’m pretty certain nothing will “improve” from this point – but like I said Ben is stubborn. We had a good Thanksgiving with some friends and family and are hoping for a good holiday “boat parade” party on 12/13 (we are in fort lauderdale after all). Having all of this at this time of year is always particularly sad (and Ben’s birthday is 12/19) – BUT…..don’t give up. Ben and I have been celebrating “a last christmas” for 4 years now…..
All of my best to all of you – caregivers and patients, stay strong.
Just think about today. Tomorrow will take care of itself.
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