Take Me Home

I vividly remember this day last year.  After nine months of traveling back and forth to hospitals and doctors, it was finally Ben’s last day in hospital.  Ever.

The day before (January 5th) while I was at home with the kids in the middle of the night, Ben texted me and said that he didn’t want to die.  I’ve been torn up about that text ever since. It hurts to know that he was awake while everyone else in the world slept peacefully, and he was thinking about how he didn’t want to die. How I wish I had gone right back to the hospital at that minute.  How I wish I had never left.

I know at the time it was impractical to think of staying at the hospital overnight.  By this time last year Ben slept far more than he was awake and there was nowhere for me to rest. Ben was not in hospice – he was just in a shared room with some guy who snored a lot.  Someone needed to be home for the kids and I stayed with Ben every second that I reasonably could.  But in hindsight I wish I had been there with him when he woke up that night and started reaching out to his loved ones via text and saying goodbye. That may be a peaceful thing to do for some who have accepted that they are going to die, but Ben had not accepted it and he had not made peace with it.  Ben was still fighting for his life, so the fact that he was saying goodbye “just incase” must have been terrifying for him.  I wish I had been there, but I do find some solace that despite having moments of clarity, Ben was predominately foggy due to medication, so he didn’t necessarily dwell on thoughts because he couldn’t retain them for long.  I’m glad for that.

On the 6th of January I stayed at the hospital with him.  Its funny because I remember some of that day well, but I have no recall of other parts.  I don’t remember where the kids were, but I remember that my parents and sister were there for what seemed like the entire day and night.  Of course they were.  They always were.  But they couldn’t have been there for the entire day because the room wasn’t big enough and I do recall there wasn’t enough seating.  Still, I recall them there for hours and hours.  Maybe it was.  Maybe that’s when Lisa came back over from the Island.  I’m not sure.

I remember Chris Thomas texting me on January 6th … scared because Ben had sent him a confusing text in the middle of the night and then when Chris responded he never heard from Ben again.  I remember telling Chris that Ben was dying.  That there was no more treatment for him and I was waiting to take him home.  How terrifying that must have been for Chris because he was also dying at the time.  He asked me for our address because he wanted to send something to us, but he died before he could.  I have no idea what it was.

I remember that Ben was speaking in a whisper this day last year and he slept a lot, but when he was awake he just wanted to leave.  He wanted to go home.  He asked me where his “stroller” was.  He was referring to his walker, and when I told him it was in the car he said “that’s not very convenient.”  Haha.  Even when he was dying, he was still funny.

He was frustrated by the fact that we had to wait for hours for any EHS attendants to be available to help bring him home, and I deeply regret that we waited.  I thought I needed their help to get Ben inside and get him upstairs, but instead I wish I had just called on several of his friends and asked them to come get him and bring him home.  I hate that he was stuck in hospital because he did not really understand why he was there.

In this video clip there was a nurse in the room.  When she turned her back, Ben mouthed the words “I want to go home,” followed with “This is ridiculous.  I love you too but I want to go home. I want you to drive me home NOW.”   At the end of the clip he is just making faces.  He still made me laugh.

It was after midnight before I got him home, and the EHS attendants were rather assholish.  They were clearly annoyed that they were being utilized to bring a dying patient home, and I wish very much that I had told them exactly what I thought of their lack of compassion.  I wish I had reminded them that someday, one way or another, they would be in exactly the same position.  But I didn’t have the energy at the time – I just wanted Ben home.  I knew he was coming home to die.

I don’t remember what happened on January 7th in the day time.  I imagine I just sat around with Ben and took care of him as best as I could.  The Home Care nurse probably came, and I remember Ben liking the attention of the first young one, although he did fall asleep while she was here.  I think my sisters were here.  I know my parents were.  I know that various friends came in and out and I know I just started keeping the front door unlocked so people could walk in and out freely when they wanted.  I didn’t have the energy to keep getting up.  I remember that Ben did not want to be stuck upstairs and so we helped him down to the family room.  I was scared that I wouldn’t be able to get him back upstairs where he could shower and sleep in the bed.  I remember Lisa saying, “If he has taken his last shower, so be it.”  So we helped him down.

I very clearly remember that Dr. B visited Ben at our home that night.  I remember that Ben had a coherent conversation with him and asked him, “Am I going to die?”  That was the moment Ben believed.  It was also the last time that he spoke of death.  He spent the rest of his remaining days having visitors come in and out to play crib, and talk, and laugh.  He fell asleep often while people were visiting, and he sometimes said strange things.  At one point he tried to show off for Lisa (my friend, not my sister) which startled us but it was funny.  He told one of our kids they were adopted. (Not sure if he was joking or if he believed it after all the years of joking that Raegan didn’t look like anyone in the family).  I don’t think he actively worried about dying anymore, once Dr. B said it was so.

As I rapidly approach one full year without My Ben, I am feeling a small sense of relief that I (hopefully) will no longer constantly find myself thinking “this time last year ….” Instead of wanting to slow time down, I now want to speed it up.  I want this year to be over despite the fact that time is pulling me further and further away from Ben.  But since I cannot stop time I want to experience some relief from having that first year over.  I want some freedom from the pain.  I don’t want to constantly remember that “this time last year the pain was terrible.”  I don’t want to remember that I was scared. That the kids were anguished.  I just want that part to be over.

This morning I woke up thinking about the number 13.  I have always said that 13 is a lucky number for us because it is the day that Ben was born and the day that Raegan was born.  I realize that it was also the day that Ben died, but that was also the day that Ben’s pain was left behind.  Which is good.  I wondered to myself if there was meaning behind all the 13’s,  and then I heard Ben say “stop looking for meaning where there is none.  It just is.” Ever practical Ben.  Maybe he’s right.  But then I went to add this song to this blog post and for the first time I watched the video open up.  Well, check out for yourself what it says at the beginning.  I think Ben was wrong this time.

 

 

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Whew! THAT Week is Done!

Well now, that was definitely a crazy week.  It started on Monday with Ben becoming increasingly confused and saying strange things.  It was humorous at first and seemed to happen only as he sort of drifted between that sleep / awake state, so I wasn’t too worried about it.  We managed to capture a couple of pictures that evening at home.  This is my favourite:

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On Tuesday morning we went to the follow up appointment with the respirologist at Jim Pattison.  Before we left, we snapped a few pics of early morning love, since the plan was to head right to Vancouver General Hospital afterwards and we knew Ben would stay in hospital for a few days:

While we were waiting for the respirologist appointment Ben started sending some strange texts that didn’t make a lot of sense, and he began seeing things that weren’t there.  He seemed a bit ‘off’, but he had his chest xray and met with the respirologist (nothing new to report there), and then off we went to VGH to get him checked in.

The only way that Ben could get in on such short notice for a cordotomy was a planned admittance through Emergency.  We had been given instructions to go to VGH Emergency and complain about leg pain (which, as you know, was intense and often unbearable for Ben, so there was no concern about having to ‘lie’.)  However, like every Hospital Emergency Department it was no easy task getting them to admit Ben and to call the neurologist like we had been instructed to have them do.  I think the admitting clerk thought I was lying when I insisted that the neurologist wanted to be contacted immediately.  It was quite frustrating, and they made us sit in the waiting room for a long time.

While we were in the waiting room, Ben’s hallucinations and disorientation became worse. He pointed to a poor fellow in a wheel chair and insisted the he (Ben) had driven that fellow around while he worked last year.  Meaning that the fellow in the wheel chair was a bad guy.  I said “No you didn’t” and Ben said, “yes I did.”  I said “No you didn’t” and Ben said “YES I DID.”  So I said “Where?” and without missing a beat he said “North Burnaby.”  Sigh. No, he didn’t.  I’m glad the guy in the wheel chair didn’t hear.  He also asked me if I had confessed to all my criminal activity.  I just said “yes” and that seemed to satisfy him.  Then Ben started to drift off while he was sitting in a chair, and suddenly jerked and threw his IPhone onto the floor.  Thank Heavens for Otter boxes.  No damage done.

Eventually they took Ben in and gave him a lovely bed in a hallway.  Good times.  Ben slept until one of the Neurosurgeons came to see us.  He was an amazing doctor – really kind and he ensured Ben was well cared for.  He gave us his phone number and always returned our calls, and he visited Ben several times over the next few days.  (He even feigned interest when I told him the story of how Ben and I met, and said it was a good story.  I liked him.)  He looked and talked like that actor from ER (the tv show) who played the Croatian doctor.  I fell a wee bit infatuated.  Haha.

Dr. Croatian (can’t recall his name) got Ben checked in and put into a private room where Ben pretty much slept for the rest of the day and night, with a little break for Thai food brought to the hospital by Barbara.  (By the way Barb, I found the money I gave you shoved into the bottom of my purse.)

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On Wednesday morning (December 9th) I left our house at 6:15 am to ensure that I arrived before the surgery.  I got there in plenty of time, but when I got to his room he was gone.  Luckily a nurse saw me walk in and said they had just wheeled Ben over to the elevator, and that I could probably catch them.  I did, and its a good thing too because Ben was totally shaken up.  It seems that he had been fast asleep when all of a sudden a bunch of nurses rushed him, woke him up, started washing him down and talking about getting him down for an angiogram.  Since Ben was not there for an angiogram he freaked out and made them stop, which stressed the nurses out because neurosurgery was calling for Ben and he refused to go.  It was a bit of a gong show.

Eventually we got downstairs, and Dr Croatian walked in and all was right with the world.

Glossing over the details that I will let Ben tell you about when he’s feeling up to it, the bottom line is that he had the cordotomy and he was in the CT room for much, much longer then expected.  Some random doctor finally approached me and asked me if I would like him to go find out what the hold up was.  It turns out that they were halfway through the procedure and had knocked Ben out briefly in order to sever the nerve, but when they tried to wake Ben up he wouldn’t cooperate.  (Eventually he did).

The procedure itself seems to have been a success in that they severed the correct nerve, and Ben no longer appears to have any pain.  Or at least, it is much less.  However, for whatever reason Ben has been extremely weak since the procedure and is now unable to walk unassisted.  We are hoping that will remedy itself.

On Wednesday night around 11:30 pm the nurse called to tell me that Ben’s blood pressure had dropped to 89/64 and his heart rate was 140. They were concerned about a blood clot again so they took him for a CT and a clot was ultimately ruled out.  Then they moved him to a unit that is sort of an ICU but a slightly less serious version of it.  I was just pulling out of the driveway to go back to the hospital when Dr. Croatian called me to give me an update and let me know that he would not release Ben to go his appointments at Burnaby General Hosp unless his blood pressure came up.  In an effort to straighten all that out, they started giving Ben IV fluids, and by the time I arrived at the hospital things were looking up and Ben was finally coherent after three days of talking about men sitting on television sets, and reminding me that we had five children and one was named Tinzaparin.  Some of the stuff he said did give me a chuckle.  He was so out of it that I climbed into bed with him and amused myself by taking silly photos while he slept.

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Two good things happened while Ben was in hospital …. one was that his friends from Ottawa came to visit with him and spread the love (I can’t believe I forgot to get a picture), and the other was that Dr F and Dr B arranged to come visit Ben at our house after he was released from hospital, so that Dr F could bring his cool guitar to show Ben.  (As it turned out, I had to cancel them because Ben didn’t get released on time, but they are going to try again this week.  Super nice of them to offer though).

Ultimately Ben became stable enough to be transported to Burnaby General on Thursday to meet with the oncologist out there and get his blood work done.  It took a bit of convincing, but Dr. Y finally agreed to go ahead with the Nivolumab treatment the following day.  He had been worried that since giving Ben the first dose, Ben had been hospitalized twice and therefore he was assuming that it had to do with the medication.  But once I explained the reasoning for the hospitalizations I convinced him that it didn’t have anything to do with the Nivolumab.

And so, on Friday, Ben received his second dose.  Yay.  That was a happy moment, but overall Friday was a very difficult day.  Not gonna lie.

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Ben was just so exhausted that walking even short distances was too much without rest.

In any case, he received the treatment and we came home where the kids were super happy to have him back.

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Since we got home, Ben has been really tired but I am hopeful that he will slowly regain some strength over the next few days.  We have numerous appointments scheduled for the week of Christmas including “Family Chemo Day” on Christmas Eve, but most of the upcoming week is free to allow Ben to recuperate a bit and spend time with the family.

Hug your families. xo

 

Hi Ho, Hi Ho, Back To Hospital We Go

I am writing this from the ER of Surrey Memorial.  Just as Ben finally started to get some pain relief from the radiation (for the pain in his groin), a new pain slowly crept up in his rib / liver area.  It started on Tuesday, and by Friday when Jeff flew home it became intolerable, accompanied by shortness of breath.

(Since I speak of Jeff flying home, I will take this moment to confess to being so consumed with all things Ben that I accidently drove Jeff to the Tswassen ferry terminal instead of the airport.  That’s right …. I was driving along when Jeff inquired if I was certain that I was going the right way.  “Of COURSE I’m going the right way” I replied indignantly.  “They changed the roads to the ferry since you were last here.”  “But I’m not going to the ferry” was Jeff’s answer.  Duh.  And there began a mad trek to find my way back to the airport on time for his flight.  We made it.  Sorry Jeff.)

In any case, by Friday afternoon Ben was being felled by pain in his liver area and was having difficulty breathing.  I spoke with Dr H (pain and symptom management) and she encouraged me to bring him to the hospital so they could figure it out. She was incredibly helpful … phoning ahead to make sure they took him right away, and then providing me with her personal cell phone so that I could keep her updated.

Long story short, they did a ct scan and somehow messed it up.  They were looking for a blood clot which was unlikely since he is taking blood thinners, but you never know.    The image did not turn out well but they didn’t believe there was a clot.

Dr H told me that Ben should be admitted to hospital until the source of the pain was determined, and she spoke directly with the ER doc and told him the same.  He intended on admitting Ben, but Ben so badly did not want to stay in hospital that I told them I could manage at home and asked them to release him.  So they did.  Unbeknownst to me, Dr H told the ER Doc to expect Ben back this weekend, and she was right.


                                              Connie visiting with Ben on Friday

Fast forward to Saturday night.  The pain literally brought Ben to his knees last night. So I called Dr H this morn and she told me to bring him back to hospital and have him admitted.  Ben agreed, which tells you how much pain he is in.

As I write this he is being admitted. He has been sufficiently drugged and is sleeping semi peacefully in the ER.  The ER doc checked his CT from Friday and let us know that there are metastasis in the liver and lungs along with fluid in the lungs.  They assume that is causing the pain, but I believe another CT is being ordered.  Hopefully they will do it correctly this time.

It is doubtful that Ben will be able to complete his radiation, because the pain causes him to feel like he is being stabbed and it causes him to move suddenly, which cannot happen in the CT or they will radiate the wrong spot.

I have emailed Dr K to ask him to please try to access the Nivolumab right away, despite not having coverage.  Ben needs that drug.  I don’t understand who has to prescribe it, but Barb has just told me that Dr K said he cannot.  I don’t know why.  I guess I will have to follow up on that tomorrow.  But the bottom line is that we need that drug.  Now.  It is unreasonable at this point to think that Ben could fly to Toronto, so Nivolumab it will be and I don’t care what needs to be done to get it.

Jaime and Papa


Raegan and Papa

  

Zak and Papa



Fuck you, cancer

The plan, it is a hatching…

I am writing this at just about midnight, having just returned home.  Ben was admitted to Surrey Memorial Hospital today due to an obvious deterioration in his condition.  He is finding it difficult to walk (as he mentioned in his previous post) and tends to look like he’s just polished off a 40 of rum when he’s walking.  (Haha.  He’s going to love it when he reads this one!).  So we made it into one of the rooms in Emerg, and Ben just crashed from the pain and the exhaustion:

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But then lovely Nurse Tracy arrived, and she told us all about how she could take the pain away.  Dear, dear Nurse Tracy.  Getting prepped for those pain meds made Ben pretty happy:

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Well, NOW he’s feeling pretty good, so why not get up and make a pit stop so that the whole of Emerg gets a vision of this little number in a short dress….

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There’s my man!  Amazing what some good drugs and cute nurse do for getting a man smiling again.  lol.

So once he got settled in, various people came to check him out.  Three different doctors and a few nurses, and one person who took a lot of blood.  One of the doctors decided to get to know Ben rather intimately and cracked jokes the entire time while doing so.  If I hadn’t been laughing so hard I would have taken a super cute blackmail photo for the blog.

In any case, when all was said and done, we now seem to have a tentative plan.  I believe (but don’t hold me to it) that an attempt will be made tomorrow to get a CT guided biopsy of the metastasized  site.  That will be followed by radiation to zap that bastard tumour out of Ben’s butt.  (haha…he’s also going to love to read that.  He says that other people get ‘cool’ cancers and he gets stuck with ‘ass cancer’).

Dr M (spinal surgeon who is not able to operate) spoke with Dr F in Vancouver (who is the one guy that may be able to operate, if that turns out to be the best option.  I doubt if surgery at that site is the best option, but we’ll see).  In any case, Dr F thinks that the tumour may require a ‘special’ radiation treatment that can only be done in Vancouver.  How fitting that my Unique Ben needs a Unique radiation treatment that requires ongoing commuting to Vancouver.  He just can’t do anything the simple way, my guy.  No normal radiation for him.

Dr F is trying to expedite the biopsy which may be done at the BC Cancer Agency in Vancouver.  We will find out tomorrow.  It is possible that they will radiate the crap out of that tumour, and then leave it to see what happens (and remove the kidney, of course).  I believe that chemo is a requirement after the kidney has been removed, due to the expectation that some rogue cells may escape during the surgery.  That kind of sucks, but so be it.

So that is pretty much the plan in a nutshell, which I realize is vague at best but a plan nonetheless.  So then we focussed on a little fun like this:

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Yes, that is Beth who flew in from Alberta today to spread the love.  (Look at Ben just revelling in that hug!)

And then there was this:

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As you can see, Ben has perked up a bit after the hug from Beth so he was warmed up for his picture with Zach.  The only one I missed was a picture of Ben and Ryan, who is also over for work and managed to stop in to say hello to Ben.  I was kicking myself afterwards for not getting a picture.  Ryan…if you’re reading this, head back to the hospital so I can get one!

Anyway, thats all we have for now.  He may be moved into Vancouver tomorrow.  We aren’t sure at this point but will let everyone know as soon as we know.

The plan, it is a hatching