tlsinftl

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.

Tom

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.

So,

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.

tom

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.

Tom

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.

Tom

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.

tom

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.

Tom

So, Ben had a procedure today to drain the abscess on his liver. HIs GI doctor was surprised because he is draining bile vs. pus and he wasn’t sure why that is happening. Tomorrow, they are going to inject dye in him to see if there is a backup somewhere….the last they looked it didn’t appear his stents were blocked, and his bilirubin has been low(ish), around 2.8. He said they may put in another stent, plastic this time….he said if he has to keep going in he might as well use plastic. Up until this year Ben has had good luck with his metal stents, but I guess after 4 years (wow, hard to believe it’s been 4 years), I guess they are bound to have some issues.

I did some searches of liver abscesses and i do realize they are common, but couldn’t quite tell if anyone had bile come out vs. pus.

I’m also supposed to go home for a family wedding on Thursday. I haven’t been home in two years and I’m feeling guilty if I decide to go (Ben’s sister in law is staying with us in case I decide to go….and she is insisting I get away)…..but I just don’t know.

Another day of fun