Sometimes I Smile

I was looking over some of the blog posts of late, and I realized that if one were to be reading or following my blog they may think that I am a big Debbie Downer.  Sarah Sadface.  Wendy Whiner.  You get the picture.  Honestly I’m not.  Not every day.  At least not every minute of every day.  And even when I do feel like a Depressed Darlene I try not to take the world down with me if I can help it.  Maybe just one person each time, and I try to spread it around.

But sometimes I smile.  Like when I see things like this:

                                                            Easter dinner at Mom and Dad’s.

I also smiled when my friends came over to help me put together yet another Ikea product before our weekly “Wine and Greys Anatomy” night.

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And when I watched Jaime play volleyball on Easter Sunday:

(They won the tournament, by the way.)

The kids make me smile:

                                                  (Zak came home for Easter, the Good Boy!)

I do admit that I am more often down than up, but cut me some slack – it’s only been (gulp) two and half months.  Every day that passes takes me one day further away from Ben. When I think too hard about time passing I can’t help but think about Raegan.  She is only fourteen, and in the blink of an eye another fourteen more years will have passed.  She won’t even be 30 years old and she will have been without her Sweet Dad longer than she was with him.  I am so afraid that she won’t remember him.  After all, what do you remember from that age?  I don’t remember very much, but then again, I didn’t lose my beloved Dad at fourteen, thank God.

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Anyway, the point of this post is to reassure people that I’m not a Gloomy Gus every minute of every day.  I still laugh.  I’m sad a lot, but I still laugh occasionally and I smile more then that.  It’s just that I write this blog for myself and I’m generally moved to write when I am feeling particularly down.  It makes me feel better and allows me to think about Ben while still keeping busy so I don’t totally stop breathing.  Because sometimes I think too much or I stumble across things like this, and I just can’t breathe…

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Boy, did he ever love his kids.  He was a GREAT dad.  The best.  Even when he annoyed the Hell out of me (and let’s face it, sometimes he did, and you are all liars if you deny that about your own spouse), he was still the best dad.  Ever.  Period.  And generally a damn fine husband too, for that matter.

Those texts were while he was in the hospital.  Eight days before he died.  He loved fiercely.  He fought hard.  I always feel his hand on my shoulder when I sit in his office chair and type on this blog.  I feel it now.

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When I feel particularly low, I look at things like this and I smile:

How could anyone look at that and not smile?

Hug your families.  XO

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8,395 Days

That’s how many days I have known Ben.  (Give or take a few days for Leap Years, and then of course there is the fact that he died 47 days ago so I suppose I should subtract those days too.  But I digress….)

I know that it has been eight thousand three hundred and some odd days, because it was this exact day 23 years ago that I landed in Regina at the RCMP Training Academy and promptly met the love of my life.

That morning looked something like this …

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Yup.  Thats me.  Twenty two years old.  Swearing to serve and protect the good people of Canada (not to mention jumping for joy at the knowledge that I would be earning a whopping $31,172 per year. Canadian dollars.)

That afternoon I hopped on a plane and landed in frigid Saskatchewan where I was immediately introduced to my “Big Brother” Troop which happened to be … Troupe Douze.  Ben’s troop.

Within days, this picture was taken …

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Followed shortly after by this one …

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(I’m pretty sure I was not allowed off base when this picture was taken, but Ben was a bad influence and he was very good at sneaking out without getting caught.  He was the one that taught me “If you don’t sign off of base then you can’t forget to sign back in.”  Seemed logical at the time, and I never did get caught).

That picture was followed the next year by this one …

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And these …

Those two were on the cruise ship on our honeymoon.  We had to take them of ourselves.  I love how we always posed.  We laughed a lot together – he really was my best friend and there was no one I would rather be with.

And all of a sudden in the blink of an eye, twenty three years have passed.  We have three beautiful children and we have loved each other even when we couldn’t stand each other. There was never any real question that we would “love, honour and cherish until death do us part.”  I just never imagined that the “death” part would happen before our 22nd wedding anniversary.  In fact, I’m more than a little annoyed at Ben today because he promised me he would live until he was 100.  Literally.  He actually promised me that several times over the duration of our marriage.  And I believed him too, so today I am calling him out as a big fat liar.  (I feel like he is standing behind me as I type this, with his hand on my shoulder, smiling that sweet smile of his and chuckling as he always did. I cannot stay mad at him.)

Today Raegan asked me to pick her up at the Save On mall after school.  When I pulled up, feeling rather gloomy and missing Ben on this 23rd anniversary of the day we met, there stood our beautiful daughter holding out a Starbucks upside-down-long-pour-Americano for me.  Just because.  And I was reminded how grateful I am for the fact that I had Ben for his entire adult life, and now I am so fortunate to be blessed with these pieces of him.  I have so much more than so many others.

Ben, I miss you more then I could ever adequately describe, but these three young people help take the sting away like no one else but you ever could.  Thank you for them.

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The Good And The Bad

I haven’t been able to bring myself to write, since the last few days have been quite trying.  Ben mentioned some of it on his last post, but he glossed over the dirty bits.  Here it is with a little more clarity; the good and the bad.

As Ben mentioned, he was run through another PET scan last Tuesday, which looked a little something like this:

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On Wednesday we went back to find out the results.  As per usual, we took the entourage with us.  Ben even tried racing Mama-Moe down the hall on his crutches which was good for a few laughs.  Ben won the race but ended up in quite a bit of pain because of it.  Worth it though, since he smiled the whole way.

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Then we waited for Dr K….And waited some more…

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And while we waited, Beth sent me an email with her latest research on Collecting Duct Carcinoma which turned up two case studies involving two people who had presented with this disease, and were in extremely bad shape at the time of diagnosis.  It was determined that their primary tumour over expressed HER2, and therefore they received various medications along with a double HER2 blockade.  The patients then experienced a dramatic improvement and a progressive decline in the size of all the multiple cancer lesions.  Well, well, well.  This is when our prayer turns to “Please Dear God let Ben be one of those people who over express HER2.”

About that time Dr K appeared and ushered us all into the room where we received the less then desirable news that the PET scan revealed the cancer has spread into the muscle at the front of Ben’s leg.  Hence all the agonizing recent pain.

So we discussed what to do and where to go from here, and this is what he had to say:

  1. The results of the POG trial are still not back.  Those could be another 3 weeks.  So we wait.  Hopefully they will discover something behind that Door #2 that I mentioned in an earlier post.
  2. The other pathologist was not able to rewrite Ben’s diagnosis in order to fit him into a different clinical trial that offers drugs that are having promising effects on various types of cancer.  Ben does not qualify for the trial and cannot receive those drugs.   So that pretty much sucks.
  3. Dr. K offered Ben another drug called Sunitinib.  I mentioned in an earlier post that if #1 and #2 didn’t work, that Sunitinib would be offered.  After I wrote that post I did a bit of research on the drug, and noted that it comes with some nasty side effects.  Hasn’t Ben suffered enough?

We talked to Dr K about the side effects of the drug, and asked him what he hoped the drug would do for Ben.  Dr K said he hoped the drug would slow down or halt the cancer.  Then we asked what he expected the drug to do, and he said (in a nutshell) “nothing.” It was not expected to do anything positive because it is not meant for this type of cancer.  It was just another shot in the dark. Ben said “no thanks.”  I agree.  No thanks.

We then talked to Dr. K about the information that Beth had come up with.  He left the room to check and see if Ben’s tumour had been tested for HER2 and….. da da DA!  It has not been tested for that.  So now it will be.  We should have the results this week.  Please, please, PLEASE let Ben be one of the ones who over express HER2.  If he does, Dr K will be able to access the drugs used in the case reports and give them to Ben.  So there is hope again!!!  

However, there is still the matter of the insane amount of pain that Ben lives with.  Currently he takes so much medication that he sleeps about 18 hours a day.  Sometimes more.  Not even joking.  He wakes up in the morning, moves downstairs into the recliner where he pretty much remains until midnight when it is time to go back to bed.  Occasionally he tries to text and usually he falls asleep in the middle of it.  That is obviously no way to live – we have to find another way.

On Monday (tomorrow) we have an appointment with a radiologist to see if he can do some radiation for pain treatment in the area of the muscle that is causing all the pain.  If he is able to, Ben will start that on Wednesday.  Cross your fingers that he will be able to, because Ben needs some pain relief.  If he is able to get pain relief through radiation, then he can back off on the drugs and stay awake for longer periods of time.  (That would be good because I need some weather stripping put up!!!)

Lastly, the Insley Girls got together today over coffee and pedis and reviewed some of the research that Barb has done over the last few days.  Brilliant, Brainy, Beautiful Barbara came up with the idea of looking for clinical trials involving the use of the medications that Dr. K had hoped Ben could receive, but can’t because he was rejected from that clinical trial.  And…she found some.  Several, actually, and from reading the parameters of the trials it appears as though Collecting Duct is a qualifier.

Lets just take a moment here to LITERALLY THANK GOD for Barbara.  “Thank you God for our sister.”

Not that it matters too much, but none of the trials she found are local (hence the fact that Dr. K did not know about them), but rather they are out of country and also possibly in Toronto.  Which means we will go where the best chance is, even if it means leaving town.

Barb is emailing the trials to Dr K in the hopes that he can review them quickly and help Ben get into one of them IF it turns out that he doesn’t express HER2 and IF POG doesn’t turn up anything.  Time is definitely of the essence here and we are not going to sit around waiting.  Hopefully Dr K will respond this week – I am expecting him to contact us to let us know about the HER2 results, and will discuss the trials then.

Tonight we had some tough discussions with the kids about all that I have written here.  Those are difficult discussions to have – to tell your children that right now there is presently no treatment for Dad.  We explained that we still have hope, and that we will keep them updated.  We also explained that we don’t know what it will look like for us if we have to leave the province or country for treatment, especially as we near the holidays, but we will cross that bridge when we come to it.  Obviously they are all old enough to understand and agree that the priority is to exhaust everything we can find for treatment for their Dad, regardless where it is or when that might take place.

In the meantime we continue to juice and read about using food to heal cancer.  The time spent juicing is crazy – between hunting all over Surrey and Langley for the right organic vegetables and fruit (which are ridiculously expensive, I might add.  I pay $4.99 / cucumber, for example, and I go through several a day) and then preparing and juicing and cleaning … it takes up a good chunk of time each day trying to fit it in around the appointments.  So as much as I’d love to offer up the juice to guests – NO!   I told Ben he has got to stop overselling my juices on this blog, because I’ve had to go all Scrooge on about 5 of you so far and say “No, you cannot have the juice!”  But I can recommend a good juicer for you if you want to try it yourself.

Anyway, that is it for now.  We will be off to the radiologist tomorrow and hope for some pain reduction soon.  It will be so nice for Ben to be able to get out a bit.

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Hug your family. xox

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.

Fear not…

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How did I ever get so lucky as to have this bunch of awesomeness around me?  We have certainly had our fair share of challenges, but really….how many people in this vast world would give anything to have what we do?  A lot, I’d venture to guess.  I think all the past challenges were just prepping us for this one….the one where we get to be the rock for once, instead of leaning on Ben.

While I really don’t like that fact that Ben has to go through this fear, and this treatment, I’ll tell you one thing…..I can stand it. For him, I can do anything.  So bring it on….I will definitely not be defeated.  After all Ben has done for us for half of his life, I can certainly withstand this little test for his sake.  So can the kids, because they are Ben’s kids and he taught them well.

Lean on us, love.  We’ve got this one for you.  You’ve only got one job to do, and that is to heal your body.  The rest is up to us and we will not let you down.

FEAR NOT!

Loving you every minute of every day,

Your bride