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

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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.