Fart Stories Are Funnier, But You Get My Heart

As Dan pointed out in my previous post, fart stories are funnier then my musings about watching Ben suffer.  I agree … they are.  I laughed when I read Ben’s post too.

I do want to tell funny stories of how we are getting through this, and in fact there are some.  Our life is not all doom and gloom and I don’t want anyone to think it is.  I smile and laugh with Ben every day (mostly when he farts, ironically), and although we tend to avoid actual discussions about “living in the moment” and “mindfulness” it is clear that is where we both are.  Thats a good thing, I think.  Everyone talks about doing it but then gets carried away with life and the years pass without anyone knowing where they went.  Well, we are really doing it.  We are living and loving in the moment.  Hopefully we will live and love in the moment for another 50 years together.

We love each other whole heartedly and in a very real way.  We appreciate each other more, and we make a greater effort to tell each other. Sometimes we still argue (it is usually Ben’s fault) and we hug each other alot.  Ben is actively trying to get all those home chores done that I have been nagging him about for four years …. today he finally bought weather stripping and a filter for the furnace.  Thank you, My Love.  (Now could you possibly replace the phone jack cover that has been missing for almost three years?)  I appreciate that Ben cares about getting things done for me, because he loves me.

Instead of telling funny stories, I tend to use this blog as a way to blow off some emotional steam.  I don’t have a lot of options, after all.  I don’t want to worry the kids, I don’t want to have negative discussions with Ben, and quite frankly I’m sure that my girlfriends can only take so much of my constant cancer discussions.  (I try to spread it out between friends, but I know the topic must be wearing thin.) Crying occasionally in the bath tub is helpful, but I like to get it out in the blog.  I feel better after I put it on ‘paper’, so to speak.

It truly hurts my heart to see my Gentle Ben in pain.  Its a horrible feeling to be helpless and unable to make My Love feel better.  I don’t want to sink into a constant state of broken heartedness, so I prefer to get it all out here.  Isn’t that what psychologists tell you to do?  Write it down and then move on.

So I doubt you will often get a fart story out of me.  Those will come from Ben.  From me you will get my heart, but know that once its out I am able to move on and share some laughs with My Man.

Happy Thanksgiving, everyone.  Tell your family why you are grateful.  Live in the moment.  Hug each other a lot.

Wendy xo

PS.  Chris, if you are reading this, know that you and your family are in our thoughts and prayers daily.  And even though I emailed this screen shot of my FB page to you, I wanted to give it a permanent place in our blog.  You are a Titan.

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Chemo – Round 2.5

This will not be my most thoughtful or amusing post.  Quite frankly, I’m not in the mood to write and I am not feeling particularly inspired.  I can barely tolerate watching Ben next to me in so much pain, so I plan on occupying myself (when I am finished writing) by preparing Ben’s post chemo meal for tonight.  It is a trick to get just the right food in him after chemo before the nausea and vomiting begin.

As Ben mentioned in a previous post, he had the cementoplasty on Sept 9th.  His post was funny and made everyone laugh, but the pain he was in at the time was not funny at all.  A solid 10 out of 10 for pain by the time they were preparing the room for the surgery that morning.  The nurse did administer a narcotic directly into the IV for pain, and it worked for approximately 9 minutes.  Not joking.  In less then 10 minutes he was at a 7 out of 10 for pain again.

The day was horrifying, because the two hour procedure turned into hours and hours with zero communication.  As usual, Barb came down to the hospital to sit with me but was eventually required back at her office and we still didn’t have any information beyond the fact that we were reasonably certain he was alive.  Always good to know.

I finally pushed hard for answers in the evening and was allowed down into the recovery area.  I guess they kept Ben there (where family is not allowed) because every time they took him off of the oxygen his numbers dropped.  Also, Dr Radu wanted him kept overnight and so there was that whole disagreement between VGH and the Cancer Agency.  At the end of the day, as you know, Ben came home.

Within 15 hours of the procedure, Ben was back at a 7 out of 10 for pain, and it hasn’t really eased much since. As I type this, he is suffering.

I have spoken twice with Dr Radu.  He is working hard at getting Ben back in for a more selective nerve block.  The poor guy (Dr Radu) is clearly run off his feet and I have a very strong feeling that he will be doing Ben’s nerve block on his own time. They are booked solid.  He is doing everything he can to have this nerve block done before we leave on the 23rd.  I emailed him my appreciation.  If I was his mother (Dr Radu’s mother) I would tell him “You can’t save the world and you need your rest too.”  As Ben’s wife I say “Thank you from the bottom of my heart for giving up your own personal life for the care of others.”

Yesterday Ben had a biopsy on his liver.  First step in the POG trial.  The procedure was not fun for Ben and has added to his pain.  I am praying that they now may find the answers they need to help Ben.  While he was recovering from that I hounded the poor receptionist to put notes on Ben’s file to push for a more urgent CT scan.  Ben was supposed to have a CT scan between round two and round three of chemo, so a determination could be made regarding whether or not this poison is holding off the disease.  Unfortunately, summer holidays and the number of people lugging this disease around in their bodies prevented that from happening.  The lovely receptionist has asked, at my request, that Ben be squeezed in for a CT before we leave for LA, so that the results are there when we get back.  We’ll see.  We probably won’t find out the results anyway until we meet again with Dr K, which won’t be until next month.  So in hindsight, its probably not all that urgent.

In the meantime, today is round 3 of chemo.  Well, more like round 2.5 because he is only having one dose instead of two.  Two doses would have made it impossible to go to LA.  So one dose it is this time.  One dose is bad enough.  We plan on attacking it with every anti nausea med we have.  Ben has agreed to try to keep it at bay so it doesn’t overtake him.

Despite the pain, we did manage to attend a most delicious meal at Mom and Dad’s.  A send off of sorts for Zak who was heading out of town to work for two weeks.  You will note there were a couple of boyfriends along for the ride..

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I kind of caught everyone off guard here – especially the two cranky looking ones on the left.

One last thought that I did want to write on here so everyone is aware.  Flu season is around the corner.  By mid October I really don’t want to have anyone in the house if they haven’t had their flu shot.   Thanks in advance for your consideration. If you don’t want to be immunized, no problem.  Just be upfront and honest – I will meet you elsewhere for coffee etc.

And on that note I must go buy some chicken before heading back downtown for chemo.  #prayersforben

On the day I called, you answered me; my strength of soul you increased.  Psalm 138:3

POST SCRIPT: After I signed off on this post, the Pain and Symptom Management nurse called me. After explaining how much pain Ben is in, she asked us to come down to the Cancer Agency immediately before chemo. So here we are right now, waiting for the doctor. Hopefully they can figure something out before chemo.

Also…I was unsuccessful in my quest to pick up chicken. In fact, when I got to the local grocery store and discovered that the chicken I wanted wasn’t there, I promptly burst into tears. Doesn’t everyone cry over a lack of chicken? Thanks for the hug, Linda. You should have seen the look on your face when I started crying. If I hadn’t been so upset I would have laughed.

POST POST SCRIPT:  We received the call.  Second try at nerve block happening TOMORROW!  God bless Dr. Radu.

An Honest Love Letter … Saint-Onge Style

To my Groom,

I am sorry that you are in so much pain.  It truly, physically hurts my heart to watch you suffer.  I wish I could take all that pain away.

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(I bet this is the face you are making right now as you read this)

I know what you’re thinking.  You’re thinking, “LIAR!  You would not agree to taking all the pain!”  Fine.  You caught me. You’re right.  That was, in fact, a lie … you know me too well.  But I would definitely agree to take half of it.  I would totally take half. Or at least 35%.  But probably half.  Asking me to take it all on would be a little much, don’t you think?  That would just be mean, to want me to take it all.  But I would agree to a solid 50%.

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My Dear Ben … you know I have loved you almost from the moment I met you.

There are plenty of people out there in this world who love you deeply, but none as deeply as I.  This is a truth that I know without a shred of doubt.  Here’s how I know:

I am the only person who is constantly exposed to your flaws.  I am the only person who, for two and half decades, has seen you at your worst, your angriest, and your saddest.  I am the only person who has seen it all every single day of your entire adult life.  I am the only one who truly knows the real you.  And still I love you.

When I think about the fact that I am the one person chosen to be your other half, I feel so blessed.  How lucky am I?

The rest of the world merely gets to see you at your best, which is a great way to see you, but its easy to love people when they are minding their manners.  Every day for 23 years I have been blessed to be the one to bear witness to the good, the bad and the ugly.  I have been blessed to have been the only person you trusted enough with your real self.  I love you more deeply then I could adequately describe.

For any single moment in our life together that I may have failed to recognize how lucky I was, I am truly sorry.  I mean that.

When I was 22, I did not fully understand the trust you were placing in me by choosing me above all others.  I’m not sure I fully understood that until recently.  I think it may take others a full lifetime to begin to grasp that idea.  Some may never get there, and instead they will just casually walk away when the going gets tough.  If there is one thing I am grateful for in this entire, shitty situation, it is the fact that I have been able to suddenly understand / see / feel what others often never do.  A deep, profound, honest understanding of what love really is.  I feel lucky to know that.

I think most people grasp the idea that love is not really about the biggest ring, the nicest house, the newest cars and the best vacations.  Many settle comfortably into that area of love where they feel lucky if they have someone to laugh with, who is happy to see them when they come home at the end of the day, and who rubs their back when they have the flu and are vomiting endlessly.  And they should feel lucky, because many don’t even have that after a few years together.

But you and I, we have all that and so much more.  We are definitely not perfect, but boy do we have more than that. And if I was asked for ten reasons why I really, really love you, I would not say things like “he brings me flowers” or “he rubs my feet” (partly because you do not.  haha.) I would say this:

a)  At 23 years old I mentioned that I may not wish to change my last name when when we got married.  You said, “OK.”  I said that I wanted us to both have the same last name, and why shouldn’t it be Insley?  You said, “OK.”  (I call liar on that one, but I loved you for your response, anyway.)  You suggested we randomly change our last name to Aachmed because it sounds funny and is always at the beginning of the alphabet, and you meant it.  (I am glad I was the one who held fast to common sense that time.)  You made me laugh.

b)  At 23 years old we found out I had cancer, and you never showed any fear.  You very matter of factly came to my appointments and my surgery.  Later on you lied to my parents about the recurrence when I asked you to.  (Then you caved and told the truth when Mom pushed you, but it was a good try.  Thank you)  You brought me Smarties and People Magazines after every general anesthetic for the next year.

c)  For the next decade I was consumed with fear over my health.  At times the fear was debilitating and it deprived us of many moments of happiness when I couldn’t see past it.  You stuck with me.  You took over the care of the kids when I couldn’t do it, you rubbed my back to help me fall asleep, and you listened to my ramblings.  You constantly tried your best to teach me about the power of positivity, and you never quit on me.  You were always my source of strength when I had none.

d)  At 24 years old I saw the biggest spider I have ever seen in my life, running across the floor of our home.  I trapped it but was too scared to do anything else.  You are also petrified of spiders, and you were at work at the time.  When I called you, you came home.  On duty.  In uniform.  You helped me trap the spider in a tupperware container and then, being too scared to kill it, we drove it into town and pepper sprayed it. (Interesting fact…. pepper spray doesn’t affect spiders).  We still laugh about that.

e)  At 27 years old you fell off a roof when arresting a bad guy and broke your tailbone.  Shortly thereafter I went into labor with Zak, and you stayed by my side even when you physically couldn’t stand up due to pain and had to lay down on the dirty hospital floor. But you stayed to welcome your son into the world.  And you glowed when you held him.  And lets face it … its not a secret that Zak was not a cute baby.  🙂  Still, you glowed with pride.  (For anyone reading this who doesn’t know Zak … rest assured he was extremely cute by the time he was 3 months old.  He remains exceptionally handsome to this day.  He looks like his Dad)

f)  At 31 years old you had a boss who worked so much overtime that he nearly doubled his yearly salary, and he bragged to you that he worked so much that he had never managed to make it to one of his kids’ birthday parties.  You, on the other hand, never missed even one of our kids birthday parties.  Ever.  To this day.  How I love you for that.

g)  At 32 years old you stayed entirely calm when we thought my appendix was bursting.  You were reassuring and solid, and the only reason I knew you were scared was because of the speed with which you drove me to the hospital.  You have always been my rock.

h)  At 38 years old I had a major knee surgery and was stuck on the couch in a full leg cast and in unbelievable pain.  In the evening you tucked me in on the couch, brought me everything I needed, left the phone by my side so I could call you upstairs if I needed anything, and then went off to bed.  When I became violently ill, you flew downstairs in your underwear and cared for me for me under what is best described as ‘utterly disgusting circumstances’.  And then, when I was too sick and too scared for you leave my side, you curled up all 6’2″ of yourself on our tiny loveseat next to the couch, with only a baby blanket to cover you, and stayed there all night while I slept.  Just so I would feel secure.

i)  At 44 years old you discovered our beloved baby had an addiction problem and was headed rapidly towards death.  You were there for him instantly.  You supported him with words and with actions.  While others criticized us, passed judgement, or simply ignored our circumstances, your emotional support for our child never waivered.  In addition, you did not hesitate for one moment to spend thousands and thousands of dollars that we did not have to ensure he received the best chance possible.  You are part of the reason we have been given back our most amazing son.  You are part of the reason that the world now gets to experience the wonder that is our boy.

(and let me point out here again that you did not hesitate one second to find money we didn’t have to pay for our son’s return to health.  So when I beg you to return to the naturopath and let them work in conjunction with the oncologist, and you refuse to go simply because of the expense, it kind of makes me want to slap you.  I am not asking you to choose between saving your own life or saving our child’s life.  I am asking you to put the same importance on saving your own life.  Our son is alive and thriving.  Its your turn to allow yourself to be cared for.  I would sell anything and everything if it will help you.  Given the choice, that is what each of our kids would choose too.  “Things” do not matter, my love.  You matter.)

j) At 46 years old you were diagnosed with cancer.  Horrible, horrible cancer.  And you kept that most horrifying news to yourself until all the tests were complete, so that you wouldn’t needlessly scare me.  You remained my rock, even when it was you who needed a rock to lean on.  You still thought of us first.

k) At 46 years old you have battled and kicked and punched this awful disease on a daily basis.  And while sometimes you can still be a bit of an ass, more often then not you do everything with a smile on your face.  I know you do that so we will not be scared.  You stay positive, not only for yourself but for us too.  You continue to do everything you can around the house.  You continue to support the kids, to be there for them, to talk to them.  Whenever possible you still fight through the pain to spend time with them.  Because of your strength, they barely notice that you are sick.  They understand, but your strength allows them to pretend you are well.  I don’t think there is a better gift you could give them.  Some day they will understand what you have done for them.  Each of them would name you as their hero.

I guess that was eleven reasons, and I could still go on.  I find new reasons every day to love you just a little bit more.  And even though cancer has not eradicated your occasional ability to still be an ass,  🙂 I find lately that the list of “Reasons Why Ben Can Be An Ass” gets shorter and shorter.  None of that really seems so important anymore.  I’m grateful for that.

A few weeks ago I looked at you and told you how much the kids and I need you.  That you must win this fight.  That you cannot quit.  You looked back at me, and through your tears you said, “I know.”

I have felt horrible about that moment ever since, and I have been riddled with guilt for putting such an overwhelming sense of responsibility on your shoulders.

So, here’s what I really want you to know ….

I do need you.  We need you.  Given the choice, I do not want to live a moment without you by my side.  We were made for each other.  I know this to be true because I have low tolerance for many others (lol) and yet I am still here with you.  🙂 There is no one else I want to grow old with, nor could there ever be.  That is a fact.

The kids and I anticipate that the end result is that you will kick the shit out of this disease.  We believe that you, our hero, will kick the shit out of this disease.  But we know this is the hardest fight of your life, and I want you to be able to focus on what you need to do for yourself, and not worry about us.  So I do not want you to bear the pressure of feeling that you have to fight for us.  I just want you to focus on you.  And I want you to know that we will all be ok.  Whatever may come, we will be ok.  We will be ok because we have learned from watching you.  You have taught us well.  You have been the best example of resilience, perseverance, and positivity.  Not just in the face of this wretched disease, but through your entire life.  You are a truly amazing man who has overcome obstacles that most are not aware of.  I am endlessly and forever able to provide examples of your awesomeness to our kids.

You will never hear me say that I am grateful for cancer.  I am in no way grateful for cancer at all.  I hate that effin disease and I cannot wait until it is eradicated.  But I am grateful for the opportunity we have been given to think about how lucky we are as a family – to have each other, to love each other, to appreciate each other.  Every moment is special to me now.  As I watch you, I see you feel the same, because you have been loving us softer.

I do not have the talent to express in writing exactly what I am feeling, but I hope this gives you a bit of an idea.  You have given us everything.  You do not owe us anything.  We love you every minute.  We always have.  We always will.  We want all your focus to remain on yourself and your own health.  Thats all.  But you must drink the green juice I make you every day.  I insist.

I remain forever grateful for my life with you.  You are an Honourable Man.  You are a Solid Husband. You are a Marvellous Father.  You are my Best Friend.  You are Less Of An Ass Lately.  You are my Only One.  Also, I know all your secrets so you are stuck with me.  You Frustrate and Challenge Me.

With appreciation, gratitude and love,

Your Bride xox

The Best Person I Never Met – Max Jeffrey

Dear Max,

I find it both strange and totally awesome how mysterious the world is.  How people’s lives cross and collide in such mysterious ways.

You and I have never met, and yet you rank as one of my most favourite people in this world.  You are kind, but we should all be kind.  But you … you go beyond the norm.  Beyond what should be expected of every human with a decent heart. You genuinely want to make people’s lives better and you don’t expect a thing in return.  I admire that.  I appreciate it more then I could ever adequately express.

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For anyone currently reading this blog, and for anyone who may read it in the future, I want to tell you who the Max Jeffrey I “know” is, and what he has done for us.

Stretch your memory back to May 26, 2015, or go back and read Ben’s post entitled “Tapped, Racked and Blown Away.” Max and his gang at Wampler Pedals sent Ben a care package which contained a special edition Ego Compressor effect guitar pedal.  It was a ‘thank you’ to Ben, after having randomly received a guitar pedal from Ben.  (Ben heard Max speak on a podcast about a particular pedal he wanted but hadn’t had any success finding.  Ben found it and sent it to him.  Neither of them have ever met each other.)

That is a great story on its own.  Two random strangers dropping little happiness bombs into each other’s lives.  Nice.  But it gets better.

As you read on the post previous to this, one of Ben’s favourite artists is Doyle Bramhall II.  Ben really wanted to see him play in concert, but given his health issues that was unlikely to happen.  So I spent some time trying to figure out how I could reach DB to ask if he would take a few minutes to record a greeting for Ben.  Just a “Hi, how are you, stay strong, glad you like my music” type of video.  I thought that might cheer Ben up.  Good idea, but a bit ambitious since I don’t live in the world of musicians or artists of any type, and I had no idea how to reach him.  I tried on Twitter, but as I expected that did not pan out and I figured I would not be able to make it happen.

I spent some time wallowing in self pity and wondering why I had chosen a career where my only contacts are Govt employees (not that you aren’t all awesome….you are….but I was pretty sure none of you could get me in contact with DB)  🙂  And then on a whim I thought about Max.  And I wondered if, being in the music business, he might be able to hook me up.

Please remember, Max is a complete stranger to me.  I’ve never done anything for him, I’ve never met him, and he has no reason to help me out at all.  But I knew he was a pretty good guy, and I was willing to put myself out there for Ben.  So I sent Max an email and explained what I was hoping to do, and asked him if he was able to hook me up.

He said “no.”  Haha.  Kidding.  (That would be a shitty ending to this story, wouldn’t it?).

What he actually said was that he knew a guy who knew a guy, and maybe he could possibly reach out to someone who could help.  I believed that he would try, but I put it out of my mind so that I wouldn’t get my hopes up.  After all, Max is a complete stranger.  Would he really go out of his way to help??

Then a few days later I woke up one morning and BAM!  There was an email from The Man himself.  Doyle Bramhall II.  I looked over at Ben snoozing and had to restrain myself from punching him in the arm to wake him up and tell him the news. Oh…that was a difficult few days for me, keeping the email exchange with DB to myself.  I walked around with a very sly smile on my face.  I think it freaked Ben out a bit, wondering why I was so happy.

I will share some portions of the emails between myself and DB with you….

“In real life my husband Ben is a Mountie and an all round super hero by day, and an avid guitar player and lover of great music by night.”

“In April, Ben was suddenly diagnosed with a very rare cancer”

“Despite all the pain he is in, you can usually find him with a smile on his face and acting goofy”

“I just want to try to do something so special for this super hero who never complains and just did not deserve this.  I want to do something that he would never expect and that would fill him with joy, and so I was hoping that you might be able to find a minute to record a message for him and email it to me.”

“He admires you, and I know it would mean so much to Ben to hear a message from you telling him to keep fighting.  The longer he fights, the more time the doctors have to discover something new to treat him with.  Who knows … maybe he’ll be the miracle.  Someone has to be, eventually.  Why not him?

And the response:

Hi Wendy… You’re story crushed my heart for you guys. This is a crazy life. I have three kids and can’t even imagine what you have already been through.  I would like to do that for you guys.. And if there is anything else you can think of.

Then I realized DB was playing in LA (short flight), right on our 21st anniversary, and during Ben’s ‘good’ week off of CHeemo-The-Rapey.  It had to be destiny.  So I started plotting with my parents and sisters, and DB and I emailed some more and he said:

… If you actually come to the LA show I will get you guys in and take care of you guys so it will be special. Let me know please so I can set it up.

And finally:

“I’m really glad to know that my music and this show will make him happy. That means a lot to me and that’s the greatest thing about music, to be able to tap into the center of the universe through it. To get inside the healing effects of it.. According to Sufi Mystics it is the highest and deepest art form, to be able to tap into God through it. I believe it. You guys are proof of that, through music we connected.”

“I will figure out something for you guys and Ben’s needs.”

Peace… Doyle

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And so, Max, all that awesomeness, and all that happiness that DB has spread to the Saint-Onge family is because of you. You made that happen, and I can never, ever repay you.  The joy Ben has received just knowing he is going to the concert, and the joy I know is coming for him when he actually attends the concert, that is all because of you.  Because you took a moment to care for strangers.

You are the best person I have Never met.

I thank you from the bottom of my heart.  I am so grateful to you.  And although I have absolutely zero interesting contacts, I would be happy to do pretty much anything for you if I am ever able to help you out.  (As long as its legal.  By Canadian law, not U.S. law.  lol)  So that would pretty much entail me being able to provide you and your wife with a place to stay if you ever come to Vancouver, and possibly acting as tour guide for you.  Although, full disclosure here,  you should know that I’m a lousy cook and truthfully, I still have to use a GPS to get around Vancouver despite having lived here for the better part of my life. But I would definitely do my best.  I would even try to bake a pie, or better yet, order one for you from a really expensive bakery.

I thank you.  Ben thanks you.  Our kids thank you.  Our family thanks you.  You are a great human being.

With deepest appreciation,

Wendy

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