Please, Live


Oh my sweet, sweet man.  How I love you.  What do I say to console you when you tell me you don’t want to die?  I don’t want you to die.

I want to save you.  I want to beg you, please don’t die.  I want to turn the page of the right book, at the right moment, and find the right cure.

I would do anything, go anywhere, pay anything.  You are everything to me.

I love you so.  Please, live.

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Cisplatin, You Asshole

When last we paused in this Tale of Crappy Cancer and Chemo, it was Sunday Day 7, and Ben had just begun vomiting. He ultimately became very sick that day and vomited for hours after I published that post.  He was also in an unbearable amount of pain.

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I contacted the Cancer Agency and they hooked me up quickly with some more drugs.  The vomiting may have been from methadone withdrawal, due to missing one or more doses.  As the nurse said yesterday…. “people usually only make that mistake once.”

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So that brings us to yesterday.  Monday.  Day 8.  Chemo “top up” day and end of cycle one.  I woke up just as Ben was getting out of bed in the morning, and one glance in his direction and my heart was broken.  He was very upset, and not for the obvious reasons.  Unfortunately he discovered he has now lost some of his hearing due to that damn Cisplatin (the main chemo drug).  Not “just” tinnitus, which was already driving him nuts, but actual loss of hearing.  Ben had decided to do a little early morning Google research, and was shattered to read that the hearing loss is permanent.  For some of us that might not be the end of the world in the grand scheme of what’s happening, but for Ben it is an indescribable, horrific loss.

Music is everything to Ben.  Playing guitar.  Attending concerts.  Music is his hobby, his passion, his bliss in life.

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Just imagine your life after your passion is ripped away from you.  You can no longer run, or read, or water ski, or golf, or paint, or knit, or garden, or ride a motorcycle, or travel, or whatever it is that you love to do.  Gone.  Thats it.  Done.  In an instant.

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Rae and Ben

I emailed our oncologist who asked us to come see him when we arrived for chemo on Monday.  We met with Dr K and Ben explained what was going on, and in a nutshell he told Dr K he no longer wishes to continue with the chemo.  The hearing loss is too much for him to take, and likely the cisplatin will damage his hearing further if he continues.  On top of that it is also completely kicking the shit out of him.  He has barely moved for a week, and quite frankly the effects seemed to worsen for him as time went on, instead of getting better.  Dr K agreed that the Cisplatin does not seem to be the drug of choice for Ben.  He said that even though hearing loss is a possible side effect of cisplatin, it “never” actually happens.  (Ha.  Wrong.)  So clearly it is not the drug for Ben.

Having said that, the combination of drugs that Ben is receiving (cisplatin and gemcitabine) are considered the “gold standard” of treatment for this fucking nightmare of a rare cancer that is kicking the shit out of My Love. The combination of those two drugs is the best there currently is.  Anywhere.  So, if Ben can’t take one of them, where do we go from here?

I asked Dr K about POG (Personalized Onco-Genomics).  That clinical trial is closed, but regardless he is still asking and still trying to get Ben in.  Some of you may have read about this a couple of months ago:

https://bccancerfoundation.com/about-us/news/bc-cancer-agency%E2%80%99s-pog-program-leads-unique-breakthrough-patient%E2%80%99s-treatment

In a nutshell, a Vancouver woman had stage IV terminal cancer with tumours wrapped around her spine.  Within weeks of receiving this treatment she had no sign of disease. While that sounds awesome, we have been cautioned that she literally won the lottery with those results.  Dr K says that POG is the future of oncology, but it is very new and no one expected it to work like it did for her.  Others have not been so lucky.  Still, I reminded Dr K that in a backwards sort of way, Ben “won” the lottery already, considering the odds of getting this type of cancer in the first place.  And then he “won” it again with this whole hearing loss thing that supposedly “never” actually happens to people.  So why shouldn’t he REALLY win it, by being the next one in the POG trial with no sign of disease.  Right?

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So Ben finished his round one of chemo, because the “top up” involved a dose of gemcitabine, not cisplatin.  Barb paid us a quick visit and brought us a little pick me up.  Note the Starbucks coffee.  Thanks Barb.

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We left the hospital with several new prescriptions and a promise that the oncology team will be discussing Ben’s next best option over the next two weeks.  They said they wanted to do some more research and put their heads together to figure out what is best.  We meet again with Dr. K on August 6th, and then the next chemo treatment (whatever that will be) remains scheduled for August 10th.

Tuesday was a better day.  Ben was tired and nauseous from the chemo but that is to be expected.  Its the hearing problems that are the worst right now.  Not just the loss of hearing, but the sounds he hears and his inability to differentiate sounds.  I am hoping that because he only had one dose of cisplatin, that perhaps his hearing might restore itself in time.

Cisplatin is an asshole of a drug.

One bright light today….the pain doctor called and let Ben know that it has been decided that he will receive a treatment where they will cement the fracture in his pelvis.  That will help with the pain, and they will also do a nerve block on him.  Yay. Little bits of good news are, well….good.

Tonight Ben was very briefly able to get up to do this:

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Thats right.  That is Ben and Zak enjoying a moment out back by the fire.  How I truly appreciate the small things now.

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Hug your families. xo

PS.  Just an added note regarding POG.  Friends and family should know that even if Dr K is able to get Ben into that trial, his case is much different from the woman who shows no sign of disease.  Ben would have to submit to another biopsy, and then scientists would have to figure out which are the significant mutations.  Then they would have to figure out what those mutations respond to, if anything.  Then there would be the question, “does a drug(s) exist that would stop those particular mutations?”

I think that is a simplified explanation.  Barb can probably explain better.  Anyway, I say that not to discourage, but I don’t want to put out false ideas of a cure.  Having said that, I will now focus on the hope that Ben will finally win the “good” lottery.

Is The Torture Worth The Result?

The last couple of days have been torturous.  Not gonna lie.

Ben is 7 days post chemo drip. (Yes, seven.  The average person would say “six days in” since he had it last Monday and today is Sunday.  But I was abruptly informed this week that when one is counting chemo days, they count Day One as the actual day on which the chemo was administered.  So in other words, last Monday was Day One, which makes today (Sunday) Day Seven. Tomorrow is Day Eight, which means Ben goes into hospital for a quick 30 minute chemo top up, and then nothing until Day Twenty One when the whole thing starts over.  For those wondering, Day Twenty One is counted from Day One, not from Day Eight when he gets his top up.  So basically, the plan is for Ben to continually either be having chemo, or suffering the effects of it.  In other words, to be constantly tortured.)

For the first few days, Ben was nauseas. The anti nausea meds worked well enough that he never actually vomited, but not well enough to prevent him from laying around with that horrid sick feeling that never quite goes away.  Then the exhaustion set in. Chemo fatigue, I’m told.  Its normal, I’m told.  (Is there anything “normal” about poisoning the crap out of your body and suffering a multitude of horrible side effects?)  In any case, Ben has literally been unable to move himself off the couch for a week.  Total and complete exhaustion, intermingled with nausea.

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But the final kick in the head for him (or maybe I should clarify “most recent” kick in the head, because who knows what other treats are in store for him) is the tinnitus.

Tinnitus (/ˈtɪnɪtəs/ or /tɪˈntəs/) is the hearing of sound when no external sound is present.[1] While often described as a ringing, it may also sound like a clicking, hiss or roaring.[2] Rarely, unclear voices or music are heard.[3] The sound may be soft or loud, low pitched or high pitched and appear to be coming from one ear or both.[2]  

Do you know what you do to treat Tinnitus?  NOTHING.  There is NOTHING that can be done.

Ben is being driven mad by the sounds he is hearing.   IMG_1629  Yesterday was the worst day, and it got progressively worse all day.  It became so bad that he ultimately forgot to take his medications, which then left him in unbearable pain last night.  (If you are wondering why I didn’t ensure that he took his medications on time, then you are obviously reading this blog from afar and are unaware of just how stubborn My Man can be when it comes to “being monitored” or, as he likes to put it, “being babied”.  Ben got so annoyed with me monitoring his meds that he deleted all the medication information from our E-calendar so that I couldn’t keep asking him if he had taken his meds.  I had to create a secret calendar and re-write everything so he couldn’t see it, and then he just started saying ‘yes’ when I asked him if he had taken them.  I believed him until I started seeing meds left in the containers at the end of the day.)  In any case, none of that really matters….I just want him pain free and not hearing noises that make him want to rip out his ear drums.

Before he went to bed I organized all his medications and ensured the calendar was updated.  He took his pain meds and eventually drifted off.  I never really know how well he sleeps, or even if he is asleep, because he generally keeps his eyes closed and ear buds in his ears at all times to fend off the other noises.  I tell myself he’s sleeping well, because that eases my anxiety.

(***Side Note….I spoke too soon about Ben not vomiting.  As I was writing this post, the vomiting has started on Day Seven.  It is over for now and Ben is back in bed resting***)

So that is where we stand on this Sunday morning, seven days post chemo drip.  We were supposed to go with the girls over to Vancouver Island this weekend, where we planned to stay with my sister and brother-in-law at their cabin.  The girls were going to enjoy a weekend of water fun while Ben and I relaxed in the sun.  Unfortunately the weather took a turn for the worse, so we postponed the trip until this upcoming Wednesday.  Good thing, because Ben definitely could not have gone over on the weekend.  At this point I am wondering if he will be able to go at all.  We will see.

In between this mess of side effects, we (Saint-Onge Five) did spend Friday in Vancouver with the blood doctor (blood clots), and we spent an hour with the oncologist and the counsellor. I think that meeting was valuable for all of us, although I was a blubbering mess for most of it while the kids were the strong ones.  Zak asked detailed questions and I was very impressed by him.  He is definitely a man now.  I miss the little boy days, but I am so grateful for his strength right now.

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All of us were able to ask our questions over the course of the hour, and there were some good questions.  In the midst of this tough discussion about cancer / chemo / side effects / anticipated results etc, the oncologist looked at Raegan sitting there quietly, and asked her if she had any particular questions that needed answering.  Surprisingly, she said ‘yes.’  Then she looked at him and asked, “If I had to go in one of those machines that take pictures (MRI), would I be able to do that even though I have braces? I’ve just always wondered.”

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God love my children!  That was just the laugh we needed.  And incase you are wondering, the answer was ‘yes’.  LOL.

So….the question I posed was, “Is the torture worth the result?”  I don’t know.  I guess that depends what the result is.

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Hug your families.  xox  Wendy

Fearless, Courage, Strength

I woke up a little misty eyed this morning.  Sometimes the reality of our situation catches me off guard in the quiet of the early morning.  Generally because I tend to spend the latter part of each evening trying to comfort Jaime before she ultimately ends up crawling into bed between Ben and I to sleep closely through the night.  Yes indeed, she is 16 years old.  And yes indeed, it is not a comfortable sleep.  And no, I will not ask her to leave.

In the middle of the night I awoke to find Jaime (fast asleep) and holding onto my hand.  So you can understand why I sometimes have to pause in the mornings to catch my breath and wipe my tears.

I confess that I worry endlessly about our kids.  Each is dealing with the reality of the situation in their own way.  All of them seem “ok”, but then I wonder….

Zak is always smiling, always positive, always willing to lend a hand, help out, sit down at the end of a work day and have a chat with his Dad.  The days of anger and arguing are long gone.  I can barely remember them in the face of this new and wonderful human being we have raised.  That all seems like a bad dream that we have awoken from…only to fall asleep and face another equally horrifying nightmare.  I do wonder how Zak will cope.  I want to rage at the unfairness of it all.  This was supposed to be our time.  Their time, really.  Ben and Zak.  This was supposed to be their time.

Raegan has shut off most of her emotion when it comes to her Dad.  I worry about that too.  I have no idea if it is a good coping mechanism or a bad one.  I wonder what goes through her head each night as she lays down to sleep.  I wonder if she’s too young to grasp the true reality of what is going on.  I feel helpless and I don’t want to keep pressing her to talk, incase that is really not what she needs right now.  Every time I look at her, I flashback to an image of Ben coming into the house after work when she was just one year old, and her sliding down the stairs to greet him so that he could carry her back up.

Jaime is strong and brave every day, but she crumbles every night.  I struggle to find the balance between continuing to parent her properly (“stop being rude.  pick up your clothes. etc”) and allowing her to grieve.  I am scared of how far into grief she may slide.  She cries so easily now.  I hardly ever see her smile.  She is often angry.

We have decided to cancel our trip to Osoyoos.  I have not yet told Raegan, and Jaime is very upset to share the news with her friend Emallee who was coming with us.  Emallee’s dad had a heart attack a few months ago, and she was looking forward to this break.  Its been a rough go for her this year too.  I told Jaime (and will tell Raegan) that we will have a “Stay-cation”.  We will take the money meant for that trip and instead we will find things to do with Ben that we can all enjoy.  Then I threw in the two happiest words in the world…‘clothes shopping.’  I think I saw a brief twinkle in her eye.

Yesterday I went out to lunch with a friend, who presented me with three bracelets.  One for myself, one for Jaime, and one for Raegan.  The timing was impeccable.

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FEARLESS.  COURAGE.  STRENGTH.

This afternoon the Saint-Onge Five meet together for the first time with the Oncologist and the counsellor.  But first we will all enjoy some time together as a family in Vancouver.  We’ll find somewhere nice to share lunch together.  Then we will hold hands and head off to the meeting where we will undoubtedly cry and feel that painful knot that punches us each in the stomach continuously.

But we’ll have each other.  And we will do our best to remain fearless.  And to show courage and strength.

Chemo and Hiccups

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Ben completed his first round of chemo yesterday.  I think the anxiety leading up to it may have been worse then the treatment itself, but then we are only 24 hours post chemo drip so hopefully I am not speaking too soon.

About 15 minutes ago, Ben developed an intense case of the hiccups.  Funny for about 2 minutes only.  A quick google search provided this little bit of info:

“Dexamethasone is likely to play a role in the etiology of hiccups in patients receiving cisplatin-based regimens. Two hundred seventy-seven patients received three doses of ondansetron 8mg intravenously (IV) at 4hour intervals plus dexamethasone 20mg IV from the start of chemotherapy, followed by dexamethasone 5mg IV every 12hours, until chemotherapy was complete. Hiccups were observed in 114 (41.2%) patients, of whom 97.4% were men. Nausea and vomiting showed inverse correlations with hiccups (P < 0.0001 and P = 0.001, respectively). In 73 patients who experienced hiccups but lacked nausea/vomiting (H+N/V-), we discontinued dexamethasone in subsequent cycles. Sixty-six patients (90.4%) ceased hiccuping, but complete protection rates of nausea and vomiting decreased to 63% and 74%, respectively. For patients who experienced both hiccups and nausea/vomiting, the onset of nausea/vomiting usually was delayed to Day 3 or 4 and began after the cessation of hiccups. We conclude that cisplatin-related hiccups are predominant in males, dexamethasone-induced, and associated with protection against nausea/vomiting.”

Well that sucks.  Having the hiccups may be better then vomiting, but they suck nonetheless.  I hope they go away soon so he can sleep, but they show no sign of slowing down.

Over the last couple of days we have had a heart breaking discussion with our GP, followed by the most difficult conversations of our lives with the kids.  They are so strong, and so brave… they take after their Dad.

And that, my friends, is all I have in me to write tonight.

Enjoying The Small Things

As I write this, I am enjoying a quiet coffee alone in the back yard, listening to the birds and the silence.


This afternoon we will enjoy a BBQ with some good friends and family, and just be happy in the sunshine.

Ben has an appointment to start chemo tomorrow.  Before that we will see our GP.  Perhaps Ben will inquire with our GP if he thinks Ben should follow through with chemo, or perhaps he won’t.  Ben struggles with deciding whether or not to ask the tougher questions.  I don’t blame him.

Whatever he may decide, I am with him every step of the way.

Have a beautiful day. Xo