The Last Blog Post

Not my last blog post. Ben’s last blog post.

Once again I have come around to another one of those “one year” markers.  One year ago today, on December 5, 2015, Ben put pen to paper for the last time. Or fingers to keyboard, to be more exact.  He was scared.  In hindsight I now realize he was even stronger than I was aware of at the time.  Fear had to have been consuming his every thought and yet, with the exception of this post that he wrote, he never really let it show.  My God he was a brave man.  How he loved us to try to keep that fear to himself and not burden us further.

IMG_0657

So here we are one year later and I am remembering when Ben wrote his last post.  I didn’t actually know it was the last one he would ever writeat the time.  I guess if I had put any thought into it I probably should have known, since I certainly knew that it wouldn’t be long before he would be drawing his last breath.

It was around this time that several “lasts” happened.  Ben had recently watched his daughters play the last volleyball games he would ever see.  When he was at that game I knew it would be the last one he would see, so thank God he was greeted by this special scene, if you recall:

By this time last year Ben had seen some of his friends for the last time.  He had played his guitar(s) downstairs in his “man room” for the last time.

IMG_1673

Over the last 11 months I have often thought about all the “last times” we had, and I’ve tried to pinpoint when they happened.  Its not something you normally think about each day.  You don’t generally pick out a new lipstick or buy some oranges and wonder “will this be the last time I buy a new lipstick / oranges?”  But I think about it now and I try to remember those “lasts” even if I didn’t know they were “lasts” at the time.

The last time Ben enjoyed the hot tub that he loved. (I don’t remember.) The last time we went for a walk together.  (I do remember, and I knew it was the last time when it was happening.) The last time we went to the grocery store together.  (Don’t remember).  The last time he cooked a meal.  (I do remember.  New Years Eve.  Gluten free pizza. I actually think in fact it may have also been the last real meal he ever ate.) The last time we shared a Starbucks. (Don’t remember). The last time we saw certain people. (I do remember.  Cal Traversy, Kevin Rolston, Joel Hunt, Sharon Woodburn.  I’m pretty sure they knew it too.) The last time he drove his truck.  (I do remember, because I was scared shitless.)

The last time Ben drove his truck was on December 31st, 2015.  A mere thirteen days before he died. He drove it in the middle of the night when he should not have been driving at all, and I laid awake praying that he would be able to make it safely back home and that it wouldn’t be the last time I would see him alive.  I knew that was coming soon enough and I wasn’t ready.  Not yet.

By the time December had rolled around I knew Ben shouldn’t be driving anymore at all. He was in too much pain and taking way too many drugs and I tried to gently stop him, but he insisted he would “know” when it was time to stop.  (Just like he said he would know if the time ever came that he would need to teach me the banking or how to take care of the hot tub.  And just as I knew would inevitably happen, my stubborn Ben never acknowledged when any of those times came.)

Ben told me he would never risk anyone’s life by driving when he shouldn’t, and I know that in his heart he meant what he said but he was no longer in a position where his judgement could be trusted.  That was a terrible dilemma, let me tell you, and in the end my love for Ben and my desire to see him happy won out over safety.  I simply couldn’t bear for him to be upset with me if I took away his keys like a child, so instead I made sure that our kids didn’t get in the truck again when Ben was driving.

This past weekend a brand new 2016 “last” occurred.  I watched Jaime play volleyball for the last time.  She played in the Provincials and then hung up her court shoes.  Here’s a couple of highlights …

I will admit to being hyper aware of every moment of the last game, and wondering if Ben too had been thinking the same thing as he watched his last volleyball game.

Life is full of lasts, I suppose.  The last time your child wears a diaper, the last day of school, the last day they tolerate you walking them to school, the last day they live in the family home.

It’s also full of firsts.  The first time you meet the person with whom you intend to spend the rest of your life.

IMG_5009

The first time you watch your life partner hold your new baby.

IMG_1685

The first time you dance on the beach.

IMG_6178

The first time your daughter says “tooted”

The first time one of your kids graduate.

IMG_4720

I guess that’s just the way life goes.  One day it’s a “first”, the next day a “last”, and on and on it goes.  That’s what keeps life interesting.  We never know what’s coming right around the corner.  And while that’s probably a good thing, let this serve as a reminder for you to really savour those sweet moments in life.  You just don’t know when it’s a “last.”

Hug your families.

Advertisements

One Month

It’s been one month since I lost my true love. (Well, it is one month as I write this, but it will be one month and one day by the time I post it).  Where did the time go?  How can it be that time moved so slowly while Ben was in agonizing pain, and yet moves so quickly away from him now that he’s gone?

The last month has been filled with the extreme of every emotion, from profound and indescribable sadness to overwhelming anger, with bouts of laughter and reminiscing in between.

I want time to stop. Every day that passes takes me one day further away from seeing his face and hearing his voice. I think about the fact that I am 45 years old, and God willing I hope I am only halfway through my life. But then I realize that one day I may look back and find that I have been without him longer then I had him.  Honestly, that literally scares the shit out of me.  I find myself once again in the helpless position of being completely unable to fix this problem.

In the past month I have been occupied with straightening out the banking. I really haven’t had much time to stop, and as I knock things off the list I find myself scared to be finished with it, because having everything in my name alone is one more step towards truly being without him.

I often fear that sanity is escaping me (not news for many of you).  I am scattered and have difficulty remembering anything, including people’s names.  (Anyone who replies to this post may wish to consider providing an explanation of who they are.  Not even kidding).  This week alone I showed up to an ultrasound appointment only to discover I was a month early. I then showed up at the Apple Store to find out I was 24 hours late. Today I showed up for another appointment at the Apple Store at 10:30, and was told I was scheduled for 4pm.  I’m starting to get concerned that I will forget where I live.  You may find me wandering the streets in my pyjamas trying to find someone to help me home.

Tonight I went out to dinner with Nancy and Jeremy. When Nancy first asked me to go, I almost said “no.”  I thought about just staying buried in bed and keeping to myself, but then I changed my mind because I fear that if I hide away on every date that has any type of meaning to me that I will never leave the house again. And since I am already leaning towards being a 45 year old who spends more hours living in her pyjamas then my teenagers, I figured I should push myself a bit.

And so I ventured out to dinner. Neither to celebrate Ben’s life, nor to mourn his loss.  Rather, just to “be.”  It was a nice evening.

I miss your laughter, Ben. XO

My Heart Hurts, But People Still Amaze Me

Monday morning rolled around this week, and it started with plans to get the remainder of the Christmas shopping done with Mom.  Unfortunately, Ben’s pain increased greatly on Sunday night, and hadn’t let up at all by Monday morning.  In addition to that his feet looked like they were turning purple and his breathing had become laboured over the last few days.  Those things led me to contact the Home Care nurse (Surrey) and the Pain and Symptom Management nurse (Vancouver).  Both advised that Ben should be taken to Emergency, as they were a bit concerned about the possibility of another blood clot.

So shopping day ended before it began, and off we went to Surrey Memorial.  Unfortunately, for some unknown reason Monday afternoon seemed to be the busiest day of the year for emergencies in Surrey.  Talk about a packed ER.  And the administrative staff was less then congenial, which made me less then happy.

In any case, Ben got in and got hooked up to the usual equipment and I was rather dismayed to see his oxygen saturation levels at about 88.  And that was with extra oxygen.  (I have learned far more about health care then I ever wanted to since this whole thing began, and I know that oxygen saturation levels of 88 is very bad.  Expecially when you are being given extra oxygen.)

We remained there for hours while Ben suffered in pain until the ER doctor finally checked him out and sent him for another CT scan to look for blood clots.  Long story short, there were no visible blood clots but it turns out that Ben was storing about a litre of fluid between his chest wall and his right lung.  The assumption was that the fluid was the reason for Ben’s breathing difficulties and there was the possibility of Ben having a respiratory infection as well, so they started him on antibiotics.

Ben was understandably extremely upset to be told by the doctor that he could not go home.  According to the doctor, Ben would be back within 12 hours if he was sent home.  And so Ben stayed.  Reluctantly.

IMG_4016
He puts on a great face as usual

Ben did not get much sleep on Monday night, and by Tuesday the only thing that had changed was that his oxygen saturation levels seemed better.  Unfortunately, we also discovered that the hospital food had not improved at all since his last stay.  What did cheer him up a bit was when I brought Jaime to the hospital for a quick visit because she was leaving for Vancouver Island on Wednesday and won’t be back until this Sunday.

Zak and Grampa also made it by for a visit, but I wasn’t there when they were at the hospital so there are no pictures.  Why wasn’t I there, you ask? Well, because I was busy at the airport picking up this surprise visitor who flew in to bring a little cheer to our lives …

Beth – showing Ben the Love

Beth spent many hours at the hospital with Ben and I on and Tuesday and Wednesday.  Thank you, Beth.

On Wednesday morning Beth and I went to a follow up appointment (for me, not Ben) that was booked with a specialist (Dr. F) and couldn’t be changed.

(The background story here is that a few months ago Dr. B had referred me to Dr. F to deal with one of my crazy hypochondriac-type issues.  The two of them happen to be personal friends, and Dr. B mentioned to me at the time that Dr. F is an avid guitar buff.  So on the occasion of my first appointment with him a month ago, I had told him the story about how Ben and I had met Doyle Bramhall II on our anniversary in September.  Turns out he is a huge fan of Doyle.  And incase you have forgotten, here is a reminder of who Doyle Bramhall II is …. )

IMG_3335

So, when I was finished my follow up appointment with Dr. F on Wednesday, he asked me how Ben was doing and he asked whether or not Ben had been able to play any guitar lately.  He then went on to tell me that he owns the same kind of guitar played by Doyle Bramhall II.  And then, this kind man (who has never even met Ben) told me very sincerely that he would be happy to bring that guitar over to our home to let Ben play it.  Can you believe that he is willing to do that for a total stranger?!  Just one more example of how truly kind people can be.  Ben is a complete stranger to Dr. F and yet he is still willing to do this in order to bring Ben some joy.

I was so moved, and I am going to take him up on that offer in the near future.  People continue to amaze me.

On Wednesday Ben remained in hospital awaiting a procedure that was supposed to be done at 11:45 am to remove the fluid in his chest.  In the end it was cancelled because the ER doctor wanted it done by a respirologist.  And so Ben waited.  And waited.  And waited.

Around 5pm the respirologist (Dr. L) arrived.  He said that Ben had been on his list of “to do’s” all day but he had been working in the ICU.  The poor guy was in a hurry to get out of the hospital to get to his 7 year old son’s Christmas pageant, but after talking to us he very selflessly decided to stay and do the procedure on Ben so that Ben could go home.  Again … so amazing.

The situation was rather comical, because Ben’s current nurse de jour was a rather annoying young lady who talked far more then she listened, and she was quite distressed to discover that Dr. L planned on draining the fluid right then and there in the ER.  Furthermore, the nurses talked about how Ben would have to remain in hospital overnight and Dr. L quite calmly muttered to me under his breath “Ben will go home tonight.” Haha.  The nurse really didn’t know what to make of it.

Before Dr. L did the procedure, he showed me the CT of Ben’s chest and told me that even though there was a litre of fluid in there, it was not likely the cause of Ben’s breathing problems.  Nor was the metastasis in the lungs.  He really didn’t know what the causing the problem, but in any case he got to work, and this is what he drained from Ben’s chest:

IMG_4034

Actually, there was even more then that but he had already sucked a bunch out of there to send off to the lab before this picture was taken.

Shortly afterwards Ben was released from hospital (Dr L was late to his son’s pageant), much to the nurse’s chagrin.  And apparently she was so distressed about his release that she forgot to remove Ben’s IV.  So when we arrived home, this is what happened:

IMG_4035
Ben had to remove his own IV

Sigh.  Nothing is ever easy.  Anyway, Ben has a follow up appointment next week for a chest xray and another visit with Dr L.

On Thursday we got into the Christmas spirit a wee bit and managed to get some more decorating done.  Ben played the part of Santa while Beth and I worked. Beth played the Elf.  Lol.

IMG_4040

That brings us to Friday.  The day we went to see Dr. H about doing a cordotomy on Ben to ease his pain.  By the time we arrived to that appointment on Friday, Ben had been suffering with substantial and sometimes extreme pain all week.  It hurts my heart to watch, and much of what Dr. H had to say also very much hurt to hear.  But at the end of the day he believes that Ben is a candidate for the cordotomy, and Ben has consented to having it done.  There are all sorts of logistics to work out including how to get it done in a timely fashion, but the hope is to get Ben in there by next week.

The other thing that happened on Friday was the arrival of a gift from Ben’s troop mates, that came in the form of a photo book they put together.  The book has old photos of each member of the troop along with current family photos.  Ben was visibly moved to receive it and look at it, and so for those of you from Troop 12 who are reading this blog, “thank you for bringing some joy to Ben on an otherwise very difficult day.”

IMG_4045

Spread the Love. xo

 

A New Week

We made it through the weekend.  It was rough.  The girls had volleyball tournaments in different cities (always fun trying to be in two places at once) and we were trying to manage Ben’s pain without having him end up in hospital.  So far, so good.

As you know from Ben’s previous post, the result of the lidocaine injection on Thursday was not favourable.  It ended up being a tough, tough night.

While Ben and Dad were at VGH getting the lidocaine injection, I was at home because of the parent / teacher interviews. Going to those alone was a big mistake …. I think I mentioned in my last post on Thursday that I was unable to make it through even one without dissolving into tears.  It was horribly embarrassing.  I kept my head down and tried to avoid eye contact with people I know as much as possible.

The entire weekend has exhausted me, so I am going to highlight it using photos.  Here we go:

IMG_3473

Jaime and Dawson “enjoying” my latest green juice concoction

Since the kids had half a day off because of the parent / teacher interviews, I figured that the least they could do was test my juices.  This green one went over better then the last one.  I am liking Dawson better then Jaime right now, because he never complains.  She whines about the juice like a baby.  LOL.

Anyway, I went to the interviews and followed that up with some yoga with this lovely girl:

IMG_3470

I think I enjoyed the class a bit more then Raegan, but at least she was willing to keep me company.

Yoga was followed up with what I now refer to as “The Thursday Night Nightmare”.  That was the night of unbearable pain that Ben suffered through.  I’m not revisiting that story.  And now that I think about it, yoga may not have even been on Thursday. I can’t seem to keep my days and times straight anymore … you’ll have to forgive me if I have them mixed up.

On Friday we just muddled through the after effects of Thursday night.  I prefer not to think about it.  But in the evening Jaime had a volleyball tournament and I managed to catch one game.  When I got to the school where she was playing I saw this poster:

IMG_3484

It was timely.  We are hanging on.

On Friday we were contacted twice by Dr. H who had things set up at the hospital for Ben over the weekend, “just incase”. Understandably, Ben did not want to go.  He’s had enough of hospitals and I don’t blame him.  We both know that he will likely need to move on to one of the other procedures that the doctors have discussed to help with the pain (one is a walking epidural which is another surgery and a week in hospital, and the other is severing some nerves which sounds scary) but right now he just wants a break.  So instead he decided to treat the pain with meds and just try to have an enjoyable weekend – as much as he was able.

And since he was not in hospital, he was able to get this beauty:

2015z86

Ben and his brand new guitar!  Woo hoo!

And then, THIS boy came home after work to have a visit with his Dad:

2015z87

All in all, Friday was much improved over Thursday.

On Saturday the girls both continued their volleyball tournaments, but I went to Coquitlam to watch Raegan play since I had watched Jaime the night before.  (Also, Colleen lives in Coquitlam so she met me at the game and then took me on a hunt for crutches for Ben.  It took awhile, but we finally found them. Its not easy to find crutches built for someone 6’2″)

By the end of Saturday, Raegan’s team had won the entire tournament!  I was gone for quite awhile on Saturday, but Ben had two friends pay him a visit during the day to keep him company.  Stephan (Ben’s troop mate) came by for a visit, and then Kirby came by in the afternoon.  I know Ben enjoyed his visits with both of them.  He got to show off his sexy new guitar – always an added bonus.

The only downside to Saturday was that Ben was too tired to come out to Mom and Dad’s to celebrate Barb’s birthday.  I went, and before coming home Dad whipped up a steak for Ben and sent it home with me so Ben could enjoy a nice meal too.  An extra special treat as we do not eat red meat anymore, and it has been months since Ben has had steak.

IMG_3505

(Happy Birthday Barb!)

Since Uncle Ben couldn’t make it, there was an awesome video sent to him by Makeda, but apparently I cannot post it on this blog until I upgrade and start paying.  So I’ll save that video for another time, along with Uncle Ben’s video response to her.

In any case, we start our new week tomorrow – one day ‘off’ and then back into the appointments on Tuesday, which begin with a PET scan.

I came across this photo from about 1995.  The outfits may be horrible, but the joy is real and still remains today:

IMG_3523

There is no one I’d rather dance on a beach with.

We will update as we can.

FullSizeRender

Thank you for the continued texts and calls to Ben.  They remind him how loved he is.  And he is.

Hug your families. xo

It’s the Day Before Surgery and All Through the House…

Well it’s a day before my surgery and I figured I should write a quick review of the Dave Matthews concert before I see the Foo Fighters this Friday. Let me first say that it was a pleasure to attend this concert with my lovely 14 year old daughter Raegan. She never whined or complained and was just a joy to be around. Once we got the venue, she reminded me that Rogers Arena did in fact sell popcorn and drinks to the concertgoers. So we both loaded up on popcorn and soda and took our seats. Well it turns out that Dave Matthews is so awesome that he doesn’t need an opening act. What he did was open the show with an acoustic seat and gradually added band members until the full Dave Matthews Band was on the stage. Raegan lit up as soon as they started playing “You and Me” which was the only song that Raegan knew – and she loved it.

IMG_3188

The rest of the show was great. He played all of my favourite songs except for 2 – “Gravedigger” and “Old Dirt Hill”. Once the encore was over we waited for almost everyone to vacate the arena before she helped me hobble to the SkyTrain for our ride back to Surrey. We had a really good time.

IMG_3194

So surgery…I am betting the farm that it will take care of the constant pain in my ass and right leg all the way down to my foot. Despite taking my pain meds, I am sitting at my desk typing this as fast as I can because the pain is so bad I feel like throwing up. So pardon me if you see some grammatical errors.

Here’s what I’ve been told. There are two people qualified to perform this surgery. It’s non-invasive. They are going to use a needle to freeze (and hopefully kill) the tumour that has caused the fracture in my pelvic bone. Then they are going to cement the fracture with orange play-doh and fairy dust. Just testing you. Pay attention now. They are going to cement the fracture with some kind of glue (I’m guessing) and then perform a nerve block on that god damn nerve that goes all the way down to my foot which is driving me fucking crazy!! So I am hoping to wake up tomorrow afternoon with significantly less pain. Fingers crossed.

Until then I will continue sitting in the living room for ten minutes at a time with my guitar, amp and a few pedals working on various Foo Fighters songs. Thankfully my bride has allowed me to have an amp, three guitars and a handful of pedals in our living room so that I don’t have to navigate the stairs to my man cave.  Thank you, honey bunny.

And for those who are interested: the J Rocket Audio Designs Tim Pierce Overdrive & Power Amp kicks huge ass. Great for Foo Fighters tones.

Tattas for now!