Almost Finished …

It seems the never ending “To Do” list since Ben passed away is finally dwindling.  I’m not getting too excited about that yet, because I have thought I was close before only to find that unexpected things pop up and suck up further endless amounts of time.  Still, I feel like I am finally almost there and that makes me slightly happy, which is a pleasant break from the crap feelings of the last 135 days.  Yes, one hundred and 35 days.  Holy. Shit.  When I actually counted I could not believe it has already been that long.

The old saying “time flies when you’re having fun” does not apply here.

This past long weekend we (and by “we” I mean just Raegan and I, since Jaime worked and Zak did whatever those on the cusp of 20 years old who are solidly sober do with their time) went to Brett and Lisa’s cabin for a little getaway.  I will admit to having had a panic attack at the thought of going further then a two block radius from the house, but I managed to get it together and off we went.  I was greeted by this view, which helped slow my breathing:

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It looks like a painting, doesn’t it?  That is the actual view off of the end of their dock. Taken with my Iphone.  You know it’s a beautiful view when an Iphone can take a picture like that.

The last time I was here was less than two short years ago for Dad’s 70th-but-looks-55 birthday:

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I suppose I need to adjust to the fact that unless I plan on moving out of province (I do not), I will have to get used to a lot of “first time here without Ben” moments.  I might as well get them over with, and what better way to do it then with those I love most.

The weather was iffy and Raegan was actually quite sick, but here’s a few pics of our time:

I am still waiting for Jenna to send me the rest of the pics.  Hint hint.

The rest of the week thus far has been rather mellow.  A few moments of anxiety and freaking out that were tamed by the Lovely Lisa Opsahl, interspersed with taking care of Raegan who cannot seem to shake this sickness, along with some actual normalcy.

This day last year (yes, that is how I still continue to think) Ben wrote this.  (<< click there.) He had received the most thoughtful gift from a complete stranger who still remains near and dear to my heart, despite having never met him.  He really brought Ben a lot of joy after several weeks of anguish.

Today I did this:

One on each shoulder.  Excuse the bruising and the bleeding … that will go away.  The left shoulder is a vague replica of the picture on the urn that holds My Beloved’s remains.  The words are mine – well, mine after I stole them off the internet.

The right says “The love and the laughter will live on long after all of the sadness and the tears.”  That is a line from the song that Jeff chose to play at Ben’s service.  When I sent him a picture of the tattoo he took the opportunity to remind me that I had mocked him mercilessly for choosing a country song to play for Ben as he was dying.

Ah, Jeff.  Our relationship is one of sarcasm and insults, with an underlay of pure understanding for how we both loved Ben.  I am very grateful for him.  I wish he lived closer, but don’t tell him I said that.

This morning he also told me to check out a particular song by Miley Cyrus.  I thought I would hate it (not her biggest fan, plus it is called “The Twinkle Song”  WTF?) but it turns out I loved it.  I’m never going to hear the end of it.  I’ve tried to post the song several times but it doesn’t seem to work, so I’ll link it.  Click here.

I was also checking out a FB group recently and found that someone had posted a remake of The Sound Of Silence.  It was done by one of my son’s favorite bands … Disturbed. (Never heard of them?  Me neither until Zak went to their concert.  Pretty sure that no one over the age of 21 knows who they are.)  In any case, I normally have an automatic dislike for the bands that my son covets – must be the generation gap – but I actually loved this remake. Mostly for the passion with which it was sung.  Take a look / listen:

When I told Zak I had found a song by Disturbed that I loved, he said “Sound Of Silence?”  I said, “Yes.  I loved it.  Can you believe it?”  He said, “Meh.  I didn’t like that song.”

Apparently the generation gap cannot be closed.

In a few days our son will celebrate his 20th birthday.  Another first without Ben and I’m so very, very sorry for him that he will miss it.  I wish our story had a different ending.  In the meantime I will continue to swim through this shit storm that landed on the Saint-Onge Five.  I’ll keep looking for that crack of light and remain grateful for the time we had together and for what he left me.

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One last thing … since it is one year to the day that Ben received an unexpected Happiness Bomb from someone he never met, I want to do the same in a small way.  I want to take a moment to give a shout out to a man I have never met.  A fellow Lower Mainlander who has found himself in the same unenviable position that Ben did.  G. William Gould is his name.  I can tell from reading his blog that I would really like him, and so would have Ben. He has started an amazing foundation – a Make A Wish For Adults, if you will.  I’m going to link his blog to my home page, but in the meantime I want to share the link to the words he wrote today. He got some great news, and you can read about it here.  I have a pretty good feeling he has discovered his real purpose in life (forgive him …. he was a lawyer previously.  Lol) and will be around for a long time helping others in similar positions.

I love good news in the fight against crappy cancer with a small ‘c’.  If you want to spread some random love and good wishes, give his post a ‘like’ and let him know that strangers are rooting for him.  The comments Ben received on this blog really kept him going.  Pass on those feelings to someone else.

And in the words of G. William Gould, shamelessly stolen directly from the Welcome page of his blog, I would also like to say that “If you enjoy or otherwise find any value in my writing, please take the time to share, tweet, reblog and like your favourite posts.”

Have a great rest of the week, friends.  Hug your families, spread the love, and take a moment to remember The Titan.

I Can’t Even Give This A Title

With a broken heart I briefly update you all to let you know that yesterday morning I had to call an ambulance for Ben, as he had been in so much abdominal pain overnight.  A CT scan at the hospital revealed what we all feared – that the Nivolumab has not worked and the disease has further progressed.

There are no adequate words to describe our devastation.

While Ben continues to express a desire to fight hard, his body is also sending him signals that he cannot ignore, as he asked me to bring the kids back to the hospital last night despite having spent hours with him during the day.  We had some very meaningful time together as a family last night.  We plan to continue to have more meaningful time together for as long as we can.

It is our plan to go back to the hospital this morning and try to bring Ben home today with nursing care.  He wants to be at home surrounded by our love, and we want him here.  This is where he belongs, in this house built on struggles, determination, and an indescribable amount of love.  We are the Saint-Onge Five.  We will always be the Saint-Onge Five.

Please know that all your love and support means so much to us, but I do ask you to understand that I am very preoccupied with The Titan and Our Kids, and it is difficult at times to respond to texts.  Those of you who know me well, you know that I am always very focussed on the task at hand when the shit hits the fan, and right now my sole focus is on the four loves of my life.

Many of you who love Ben dearly but are not in close proximity are sending me texts of support.  Thank you.  I do receive them, I just cannot always answer.  Writing on this blog is a good way to send your messages as I can sit peacefully when times are quiet and read them.

With much love and appreciation, and an understanding that many more hearts are broken in addition to our own,

Wendy, Zak, Jaime and Raegan

Weeks?

Thank you to Christine and Rob who sent us in a limo last night to enjoy the Christmas lights of Surrey.  It was a great way to chill out after the  tough day we had. Ben had been unable to do the MRI earlier because he was simply in too much pain.  He ended up doing a CT, and we figured the results were less then ideal when the radiologist neatly maneuvered around our question “what did you see?”  She told us that Dr H would call us later. Hmmm.

Dr H did call later, but first we were treated to this:



Once we got home I spoke to Dr H on the phone and she explained that there had been rapid progression with the disease.  There is an additional large tumour in Ben’s “stomach” (not really his stomach, but I can’t recall the medical word she used).  Somewhere in that area.  As we later found out, there had been no sign of that tumour even two weeks ago.

This morning The Saint-Onge Five packed up and headed off to see the thoracic surgeon about the fluid build up in Ben’s chest.  He talked about doing surgery and told us it would be a four week wait to get the surgery once Ben made a decision to do it (if he decided to do it). Another option is to have a respirologist continue to drain the fluid like they did in the hospital.  We said we’d think about it, and we left.


 We drove down to see Dr H who had asked me to bring everyone in to see her today.  She said she would fit us in.  That is probably never a good thing when a very busy specialist offers to “fit you in.”
 Barb arrived at the hospital, and the six of us met with Dr H.  She re-explained what she said about the disease progression, and then she said (and I write this with Ben’s full knowledge and permission) that there is no evidence to suggest the Nivolumab is working, and if that is the case he may only have weeks to live.

We are shattered. Not The Titan.