Peace Pilgrimage

Well, here we are, day 3 of our peace quest. Maybe it’s just my peace quest – the girls both insist they are fine so I suppose we’ll all find out in about a decade if this trip was helpful to them or “just a trip.” Either way, we are all having a good time. Even the one who hated me for it.

Due to a need to keep costs down, I have managed to get (I think) pretty good deals on hotels so far. Much lower rates than advertised on the hotel sites themselves. Much lower than Trip Advisor too. I call bullshit that they get the lowest rates, by the way.

For fun we have been getting our kicks out of doing silly things like claiming it is Jaime’s birthday at The Cheesecake Factory, just to hear them sing to her.  I tried to post the video clip but for some reason I can’t make it work.  It made Jaime laugh, but there was no free cheesecake!

Speaking of free, we have yet to actually purchase lunches. No, I’m not starving the kids, but our hotels come with breakfast and so we take a little extra breakfast which morphs into lunch a little later in the day. Don’t judge me.

We have left a little bit of Ben in a couple of places:

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This picture was taken in Astoria. We hiked for two and a half hours in total, much of it straight up hill! Walking the streets here is like walking in San Francisco, and we started from our hotel which was the lowest point. We climbed straight up for a mile to reach the tower, and then climbed to the top of that. Awesome views and worth the climb!

We also did a river stroll. Good for the soul.

The next day we made it to Cannon Beach which was amazing. I want to come back for an entire weekend. I wish I’d known about this place when Ben was around. This is a prettier beach than Hawaii, I kid you not. The people are lovely, except for the woman who lost her mind and screamed “YOU CAN’T PARK THERRRRRREEE!!!” Twice. Yes, we get it.

And we left Ben’s mark there too…

Today we are off to ride the sand dunes in Florence (hopefully) and then on to California. Livin’ life the way it was meant to be lived, I think.

Last Year

I actually have no idea what I was doing this day last year.  I checked the blog and all I posted on May 13th, 2015 was this.  When I try to step back from this shit storm of life and pretend that I was just observing the last year from a distance, I find it odd to think that at the moment I was posting about Winnie The Pooh, I was exactly eight months away from my last moments with Ben.  I’m glad I didn’t know that at the time.

Now it has been four months since I have seen him, or heard his sweet voice.

Today I was interviewed by a woman doing research into how money should be spent to improve palliative care.  I hope that if she takes anything that I said back to the palliative care teams, it would simply be that they need to stop throwing around the word “palliative” and start using “pain management.”  Ben equated “pain” with life and “palliative” with death.  All that ended up happening was that he refused palliative pain treatment because he thought if he accepted it, that meant he was dying.  (Which he was, but how does one fight hard if they just blindly accept that?)  If the first conversation with Dr P (radiology oncologist) had been phrased as “pain management,” which is completely separate and apart from “treatment of disease,” (or lack thereof, as the case may be) then perhaps he would have been more accepting of help and he wouldn’t have suffered so horribly, and so needlessly.

Side note:  we had an awesome, fabulous pain management team.  I wouldn’t want to leave the impression with anyone that they (and in particular Dr. H) were anything less than caring and helpful.  But there is always room for improvement, right?

I also suggested that more consideration and conversation needs to be had with loved ones and children.  Despite the fact that Ben had cancer, we all lived it.   It is as much about those walking the shitty cancer path (with a small ‘c’) with the patient as it is about the patient.  The kids and I were right here every moment with Ben.  The doctors all knew from the get go that there was no cure for this, and that Ben’s time was short.  I think in those situations there needs to be more push for realistic conversation with families about what is to come.  As hard as it is to hear, I wish it would have been pushed on us (actually, on Ben) a bit more.  Those conversations do not need to steal away hope, but there needs to be recognition of the fact that if the patient refuses to deal with what is happening, then the family will suffer long after they are gone in so many ways.  The families should have the opportunity to be better prepared, and I think that is the doctor’s job to do that. It can’t fall on the loved ones to force that knowledge on the patient, and risk the patient being furious with them for the rest of their short life.

I remember Dr. B telling Ben, “everything you do from here on in is for your family, not for you.”  Ahhh, Dr. B.  He always has a knack for knowing exactly what should be said.  Unfortunately, by the time Ben finally asked the question it was really too late for him to do anything that needed to be done to help us.  And so we suffer even more than necessary.  Losing Ben was a loss from which the kids and I will never recover, so I could have done without all the extra bullshit that came along with denial, quite frankly.

(I can feel Ben standing beside me as I type this, rubbing my arm and making some kind of joke as a substitute for saying “I’m sorry.”  I know that he would be sorry if he saw how the denial affected things over the last few months.  It’s ok Ben.  I know you were also trying to protect us.)

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In speaking with someone at work the other day, I said that I feel as though I lived in a war zone for nine months, and the war raged on for the next three months after he died.  Then I suddenly found myself back at work, because I thought that was the right thing to do.  I think to many it must seem like I had “enough time,” but I have not.  I have had no time.  I still can’t relax.  Sorrow creeps up on me at the most unexpected moments, and my body aches constantly and I am exhausted. Utterly and completely exhausted to the point of wanting to collapse (and I sometimes do). And then at other times I am wide awake and completely unable to sleep.  Usually late at night, which is why I tend to blog near the witching hour.

My mind and body need a rest.  So do the kids.  And so I have finally made an actual decision, which is a small miracle in itself.

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I have decided to work until the end of June while the kids are in school, and then I will take a break.  I will take the kids to Hawaii and I am considering bringing some of Ben’s ashes to scatter on the ocean while the sun shines.  Ben loved Hawaii.  When we come back from Hawaii the girls and I are taking off to go be in nature.  We are going to drive south with no real plan, destination or schedule.  I want us to spend time hiking and soaking up the natural beauty around us, and hopefully we will discover some peace again.

Maybe we’ll leave a little bit of Ben in various places that he would have loved.  Maybe not. We’ll see.  And we’ll talk about when to bury the rest of his ashes.

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Farewell, My Sweet, Sweet Man

It is with indescribable sadness that I let everyone know that my beloved Ben passed away peacefully at home on January 13th. Sweet husband, incredible father, undeniably great Mountie.  Ben and I  were together at home, surrounded by the love of our children, our family and our dear friends. At the time of his passing, Ben was surrounded by a circle of love, music was playing, and candles were lit as we all lay together in the same bed.  If there can possibly be a beautiful passing, this was it.

I miss him desperately already.  My anguish is slightly eased knowing that Ben was with those who love him most in the world, and his passing went exactly as he wished.

A Celebration of A Life Well Lived will be held and is open to anyone who wants to be inspired to live their life like Ben did. Reception to follow immediately afterwards.

Friday, January 22, 2016
Start Time: 1pm
Reception: 2:15 pm
Location: Victory Memorial Park
14831 28 Ave
Surrey

Condolences can be left online at www.victoryfuneralcentre.ca.  An obituary will be placed online soon.

In lieu of flowers, please consider making a donation in Ben’s name to one of the causes that were near and dear to his heart. Donations can be made in his name to The Last Door, which is an addiction recovery program that saves the lives of men and boys and returns them to their families as whole, caring people with limitless potential.  This program is near and dear to Ben’s heart. The website is: http://www.lastdoor.org/donate

Donations can also be made in Ben’s name to http://bccancerfoundation.com/.
Please click on the ‘donate’ button. Donations in Ben’s name will be directed to the Personalized Onco-Genomics (POG) clinical trials program. This program is the future of cancer treatment and is in need of funding.

Sleep well, sweet man.

Today Sucked. And Christmas Is Coming

I have no idea what happened to me today.  Possibly I am just worn out, maybe I am just not getting enough sleep in the night, but today I crashed.  Crashed.  It was one of the few days when the only thing on the agenda that had to get done was getting Raegan to her volleyball tryouts by 8:30 am, and picking her up again at 11:00.  I managed to do that but not much more.  I spent most of the day drifting in and out of sleep on the couch.  I was not a good caregiver today.

I love going to Church on Sundays.  I look forward to going to Church.  I planned on going to Church today.  And in the end I just could not get myself off the couch.  Big mistake, as it is now 8pm and I still have not even brushed my teeth.

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As Ben mentioned, he had his first treatment of Nivolumab on Friday.  He has experienced the normal fatigue, but other then that he seems to be ok. We even went out on a limb last night when prepping all his meds for the week ahead, and left out the Metoclopramide which he has been using for months to prevent nausea.  I haven’t reminded him today that he hasn’t taken it, and he hasn’t complained at all of feeling sick.  So that is good news.

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After bringing Ben home from the hospital, I drove to the ferry to pick up Lisa who came in for the night.  I put her to work immediately and she helped me decorate the Christmas tree that my friends had put together for me the night before.  I knew if I didn’t decorate it while Lisa was here, it was likely to remain undecorated until I take it down after Christmas.

It is now Sunday night.  The weekend has passed and I still have not brought out the tree skirt (or any of the other household decorations), but at least the tree is done.  Thank you, Lisa.

Raegan was in the volleyball Provincials this weekend, and Lisa and I managed to make it to one of her games.  Unfortunately, that was the game where she didn’t play. Poor girl.  Or poor us, maybe.  But at least she knew we were there.

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I also managed to find a few minutes to give Jaime a ride to (where else?) Dawson’s…

… and hit up a movie with Raegan while Ben slept.  Here is the post movie picture of Ben and Rae, which is identical to the PRE movie picture of the two of them.

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I think he might have moved a little while we were gone!  Lol.

I want him to rest and let his body heal, but man do I ever miss hanging out with him.  I think it all hit me while the house was quiet today, as it sometimes does.  I looked at the tree and wondered why I have to find the energy to decorate?  Does that stuff really matter?

The tree and the gifts have nothing to do with the true meaning of Christmas. Ben and I have had many discussions about this, and we both agree that we are definitely not interested in the gifts this year. Really….who cares?  Where does all the hype fall on the scale of what is important to us now?  Way below zero.  Even the kids do not seem overly excited for the holidays, which does make me a bit sad because we usually have a lot of fun at this time of year.  How I wish life could be ‘normal’ for them. We will do our best to make this Christmas enjoyable for them, but our focus will definitely not be on the commercialism of the holidays.  I am glad that we have always tried to keep a focus on family in the past, but it is true that we have been very guilty of falling victim to the extreme gift giving.  Not so this year.

All we want  is to have peace, calm, quiet, and time to spend with each other.  Gifts with no meaning …. not interested.  There is nothing to be purchased that can give us more joy then all of us being with each other.  I am very glad that the kids are not toddlers – I think at this point I would lose my mind in the midst of that chaos.  Peace is important.

Just peace.

So this year, if I find the time to do any more decorating, then I will do it but only if it brings me pleasure. If I don’t find the time, so be it.  Gift shopping for the kids is mostly complete.  I have picked up things here and there but I do not enjoy going to the crowded malls and I am literally incapable of going alone, so anything else will be done online.

Its not that I don’t want to recognize Christmas – I do.  And I do want the kids to have a memorable one.  But my ideas of memorable Christmases no longer have anything to do with the hype, the food or the gifts.

Simple.  I long for simple.  Stress free.  Quiet. Together.

Gentle.

Calm.

Peaceful.

Hug your families.  Its more important.

Wendy xo