This One Is For Robert K.

So, apparently I lied on February 5th when I said I was done posting on this blog. Although, in my defense I did say that I was going to stay non committal …  I left myself a little opening incase I felt moved to blog, and I happen to feel moved to blog.

Recently I decided to sell Ben’s Apple Extreme Something-Or-Other.  I didn’t really know what it was and had to google it in order to find out, but I did know that it wasn’t being used and hadn’t been used for the entire year.  Like everything else Ben bought it was essentially brand new with the box and everything it came with originally.

I put an ad on Craigslist and had several texts back and forth with some guy who wanted to buy it but he wanted me to drive it out to Pacific Center for him.  I may get a thrill from collecting a dollar or two by selling off unused items, but certainly not enough to drive into Vancouver to pass it on.  No thanks.  If you can’t come here to pick it up then you’d best find another one elsewhere.  (Silly guy, because it was a great deal.)  Anyway, the guy was a bit of a goof and kept texting me at all hours of the night over the course of last weekend until he finally believed me that I wouldn’t be bringing it to him.  He said he’d think about it, and then on Monday he texted me a photo of an Apple Extreme Something-Or-Other he had bought from someone else.  Really?  Not sure what the point of that was.  The conversation that followed went something like this:

Me: “and?”

Him:”I bought one from someone else so I don’t need to buy yours.”

Me: “good thing I didn’t drive to Vancouver then.”

Him: “well I would have bought yours if you had brought it to me.”

Me: “I am not that desperate for a  buck.”

So that was that and I was kind of chuckling over the fact that he seemed to think I would be shattered that he would not be making the purchase, when my phone went ‘ding’ and I looked at my email.  Lo and behold, right at that moment another gentleman was asking me if it was still for sale, and there began another conversation that made me smile:

Him: “Still have the Apple Extreme?”

Me: “Ironic that I should receive this email today (long story) but as it turns out I do have it.”

Him: “Perfect.  Tomorrow evening for pickup work for you?”

Me: “Well, apparently I will not be out on some wildly romantic Valentines excursion so it seems that tomorrow will in fact be a good time for pickup.”

Him: “I totally forgot about VDay being tomorrow!! How about Wednesday as my lovely wife expects me around!?”

Me: “Ha!  I’d suggest you pretend that it didn’t take an anonymous craigslist seller to remind you about Valentine’s Day.  Wednesday is fine.”

Him: “I pretend real well because at my age I forget real easy.”

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I got a laugh and a sale at the same time.

Wednesday night rolled around and my craigslist buyer arrived at my front door.  I opened the door and was greeted by Robert.  Robert-With-The-Friendly-Smile and cash in hand which I happily traded him for the Apple Extreme Something-Or-Other.  And then, surprise surprise, he handed me a gift bag containing a bottle of wine, a box of chocolate and a Starbucks card.  I was so puzzled until this lovely man explained.  He told me that he and his wife had read my blog.  So had their daughters.  And he told me he thought I was wonderful.  Then he gave me a hug and away he went, leaving me with tears in my eyes, a smile on my face and a reminder of how amazing people are.

I don’t know how to reach Robert K.  I sent him a FB message but we all know how those work when you aren’t “friends” with someone.  He’ll probably discover it in a few years. So I wanted to write another post that I hope he sees just to say …

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You made my one-day-after-Valentines-Day-alone a little sweeter.  And you reminded me about all the lovely people out there who are not Craigslist Killers (yes, that thought always crosses my mind before I sell something) but instead just want to bring a little light into someone else’s day.  I’m not amazing, but you are.  You are amazing, Robert and Robert’s wife.  Amazing.  Thank you.

You would think that for someone who suggested she may not blog again, that would be the end of this unexpected post. But it’s not. I have one more story about selling off Ben’s unused items that also made me laugh the day after I met The Amazing Robert.

Recently Raegan and I discovered a brand new OtterBox for an iPhone 6 plus (Ben’s) that was still in it’s package.  Neither of us could imagine why he hadn’t used it considering how expensive they are, but I have no need for it so I priced it for a quick sale on the local FB site.  It sold immediately and a lady came by to pick it up.  Sale over and I did not expect to hear from her again.  But I did.  I received a private FB message from her that read:

Hi Wendy. I had a look at the case when I got home tonight and I realized that it is not a Otter box you sold me. It is called a crseology case. A cheap Chinese import. I would like to know if this was a mistake.

OMG.  I could feel my face turn red and there wasn’t even anyone around to see.  I quickly looked at the photos I had taken of the case (kept in the original Otterbox) and discovered that she was right.  The word “Crseology” was stamped right on it and I had never noticed. How completely humiliating.  I had to convince a complete stranger that I had not intentionally ripped her off and that in fact it was all Ben’s fault.  Lol. I felt like I was stammering with embarrassment as I wrote back to her.

Needless to say I returned her money with my head hanging in shame (metaphorically, since I actually eTransferred it back to her).  I have no idea how that phone case made it into an Otterbox case, but here is my best guess.  I suspect that my sweet Ben who always liked to save a buck ordered an Otterbox online by someone who was advertising them for cheap.  Not one to pass up a bargain, I suspect he made that purchase from an unreliable seller and got ripped off but didn’t want to tell me about it because he thought I would tease and torment him relentlessly.  Which I would have, to be honest.

Now you may ask yourself why Ben wouldn’t have just thrown the case and the box in the garbage so that I would never find out, right?  That would have been the reasonable thing to do, but this is Ben we’re talking about.  Ben The Hoarder who never threw anything away.  Ben The Hoarder who kept every box from everything he ever purchased, “just incase.”  (Admittedly though, his need to save boxes has earned me some extra money over this last year when I have been able to advertise items that still have their original packaging. So I guess it might not have been the worst habit ever.)  I suspect that he just couldn’t bring himself to get rid of it.  “Just incase.”

I imagine he is laughing his head off over my awkward moment, since he knows I would have laughed at him if I had known what happened at the time.

That’s all for today, folks.  I’ll see if the mood hits me again.

Hug your families.

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Sometimes It’s All Just A Little Too Much

I am writing this post from Hawaii.  To be a little more exact, I am writing it from the bathtub in the condo in Hawaii, where I am hiding and trying to breathe.  It’s one of those moments.

Sometimes it’s all a little too much and I couldn’t explain why if I tried. I don’t even know.

The trip has been beautiful and peaceful for the most part. We have swam and kayaked (Lisa paddled, I sat there), relaxed in the sun, drank wine, gone down a water slide and even swam in the ocean with dolphins. I have also enjoyed 100% Kona coffee.  That’s a big deal for me.


All that beauty is not lost on me, and yet here I am hiding in the tub remembering Ben saying “I think I pulled a muscle” while I nurse my own extremely sore lower back and think about how Ben’s “pulled muscle” turned out.  And cry.

Yes, I know, I know, most muscle aches do not turn out to be cancer. But apparently sometimes they do.  If I could turn off the shitty thoughts I would. Sometimes I can. Occasionally I can’t. This seems to be one of those moments.

You know what I wish for more than anything at this moment?  I wish that all of my kids be gifted the ability to live in the moment and not in the “what ifs.”  I hope that when terrorists commit atrocities and innocent people are killed, and when men and women who protect our communities go to work one night but don’t come again because some asshole figured that they wore a uniform so they should die for that, and when another student or their mom’s aunt is given another sad cancer prognosis…..that they find a way to cope and understand that those are not their stories.  I hope that they can understand that no one knows what life holds for them, but at that particular moment that is not their story. And that if it ever becomes their story in any way, they will cope.

I hope they emulate their Dad.  I hope they don’t crawl into a bathtub to cry. Or, if they do, they only do it for ten minutes and then they remind themselves of all the beauty in the world, get up, towel off and move on.

How I miss Ben right now.

It’s time to get out of the tub.

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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Dear Ben … Love, Mario

Words written and read by Ben’s dear friend and former supervisor, Mario Bourdages, at his Celebration of a Life Well Lived.  Mario was a rock for Ben during his illness.  Even when Ben was at his lowest, he always managed to pull it together to go have coffee with Mario because that was a highlight of his week.  Mario always came to visit Ben in the hospital, and tried to take Ben’s mind off his illness.  He was a true friend to Ben, and he and Julie have been true friends to myself and the kids.  This morning when I was at my lowest, Julie asked if they could come by and I said ‘no’ because I didn’t want to get out of bed.  They ignored me and came anyway.  Thank you.

******

Wendy, Zak, Jaime, Raegan, family, colleagues and friends. My name is Mario Bourdages, and I was a colleague and a friend of Ben. I am honoured to speak today and to celebrate Ben’s life, and I know that this is what Ben would have wanted, a celebration.

I worked with Ben for the past 8 years, and I met with him every week or so for the past 7 months. Ben was a quiet guy and did more then his share of the work. He never complained about anything. He did whatever work needed to be done without hesitation. Whatever I asked him to do, whether it be a difficult, complicated task, a menial one, having to travel out of town or working long hours he would say “Sure I’ll do that”. He never spoke negatively about anyone and was always professional with everyone. He also had a great sense of humour. I also instructed on courses with him and he was great with the candidates helping them out through difficult tasks. All the candidates enjoyed working with him.

Ben would always wear earbuds when he was in the office. He had those things on all the time and he still got his work done. Some say he had those things in because he loved music. I think he did that to tune me out.

Another thing about Ben, and I don’t know if anyone who knew Ben noticed this, but Ben loved his groceries. He loved to eat. Loved to cook. He loved food from different cultures, especially spicy foods. I never knew that this would one day help him with his work.

One day Ben and I were meeting with an informant, and it was the first time Ben would meet this person and he would then take over as the main contact person for this individual. Ben wanted to make sure this went well, so he decided we would meet at a restaurant and have a meal with the person, giving him an opportunity to bond with them.  Good excuse for a free meal!  Ben and the individual got on the topic of food, and Ben mentioned that he liked spicy foods. The individual told us the restaurant has super spicy wings, and Ben, to make an impression said, “I’ll have that.” The individual told us that they are so hot that the restaurant makes you pay for them before they bring them out, because people never come close to finishing them. Ben said “that’s for me.” Well, we paid for the wings and before the plate hit the table Ben had already eaten 3 wings. Within a few seconds, Ben was on fire. He couldn’t drink enough water. He was sweating profusely and sweat was dripping from his face. He couldn’t eat anymore and all of a sudden he started to hiccup uncontrollably. The individual we were with was laughing so hard I thought he was going to pee his pants. Ben was hiccupping, laughing and sweating. This lasted for about 30 minutes, and Ben could not speak but he was able to laugh at himself. We finished our meeting and we parted ways. Even though Ben wasn’t able to say much during that meeting, the individual instantly liked Ben and ended up having the best working relationship with Ben.

During the last several months I met with Ben every week or so, and during all our visits, Ben never complained. He never complained about pain and I know he was often in pain. He never complained about having this disease, and never blamed anyone for what was happening.  He never felt sorry for himself.   He dealt with this awful disease like he handled everything else in life.  Taking it straight on  and doing whatever he had to do to try to beat this thing.   He fought a very courageous battle and kept his sense of humour right to the end.

This taught me a lot about how to live.

Behind every great man there is always a strong woman. Wendy has been a pillar of strength for Ben and the entire family. She fought right along with Ben, never taking no for an answer from anyone.  Staying positive after every set back. Even during the most difficult times she kept family and friends updated on Ben’s condition. And when it was obvious that there was no more ways to fight, she made sure Ben was made as comfortable as possible.

You are a very strong and courageous woman Wendy.

Kids, your mother is a great lady and your father, your husband, was a great guy.

Ben, you are greatly missed. Rest in peace my friend.

Encounters of Another Kind

So I’m sitting outside of the BC Cancer Agency in Surrey, waiting for Wendy to pick me up. There were some other patients waiting for a ride, or just out for fresh air.
We are literally surround by no smoking signs when what do I see but a couple standing there smoking. A little closer look revealed that they were both likely recently cleaned up junkies. By recently cleaned up I meant someone had done their laundry. It made sense because there is a detox centre nearby.
No one else seemed interested in saying anything so I decided to speak up. I said “Excuse me but don’t you see all of the no smoking signs around here.” The male shrugged and kept chatting with his companion. So I continued “Why don’t you have a little respect for people here and go smoke somewhere else.” Then he spoke up and said “Well you don’t have to be so rude about it. My uncle or something died of cancer you know.”
I responded with “Well there are people here that may be dying of cancer, why don’t you have a little respect for them. You’re standing outside of the Cancer Agency for god’s sake. How stupid are you?
At that point he started walking away laughing and said “Well I hope you’re dying of cancer. Enjoy the time you have left fucker.”
I said “I will. But I won’t live my last days being someone like you.”
That’s when he got angry and said “Someone like me eh! Why don’t I go over there and kick your ass!”
“Because you’re a coward” I said.
“Oh yeah! Well you’re fucking ugly! Old man!” He continued to talk trash as he walked away.
I stood there wondering why his comments didn’t bother me so much. I think it’s because of all of the kindness I received over the past months. I reminded myself that there are a lot more nice people in the world than there are shitheads like that guy.
Finally my ride had arrived and it was time to go.

PET Scans, Oncos and Canceros Rancheros

So Tuesday was my PET Scan and Wednesday was my appointment with the oncologist. The PET Scan went relatively well, the oncologists appointment did not. I shouldn’t say it didn’t go well, Dr K is a very pleasant doctor but the news he delivered wasn’t great. It turns out that the cancer (aka: Canceros Rancheros if it was a Mexican dish) has spread a wee bit more towards the nerves that affect the front of my leg. Which means that all of the pain I’ve been suffering from recently was not in fact muscular pain it was nerve pain related to my Mexican dish.

So, where do we go from here? Well Dr K will consult with Dr P and look into some further radiation treatment. Hopefully they can treat that particular area and relieve some of the pain.

The next plan of attack was to take another chemo drug that sounds like Sinutab but is not Sinutab. Wouldn’t that be cool? Sinutab for cancer. They’d make billions. Anyways, I turned down that great opportunity in favor of waiting for the POG results. I am hoping, fingers crossed, that the genetic sequencing done by the POG Trial comes up with some form of treatment. Because to be quite honest, it looks like we’re coming to the end of potential treatments.

My wonderful wife has been juicing the shit out of our local organic vegetables and making me drink her concoctions on a daily basis. I have to admit that while her first juices tasted like science experiments gone bad, her most recent recipes are quite tasty. Keep it up Wendy. At the very least it’s giving me a lot more energy!

Well that’s my update du jour. I wish I could write more but my leg is bothering me and well, to be quite honest, I’m feeling a little down right now.

Until next time.

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:

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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:

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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:

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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:

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Ben and his brand new guitar!  Woo hoo!

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

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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.

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(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:

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

We will update as we can.

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

Hug your families. xo