A Tip For Sleeping Better

For anyone out there who may be looking for some advice on how to sleep alone and actually get some sleep, here’s my best tip…

Snuggle a T Shirt.

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On the nights where I really need to feel Ben close I just open up that cabinet in the picture above where I store all his favourite T’s.  Unwashed.  And I inhale deeply.  And I can smell him again. It’s Heaven.  I don’t do it every night because I don’t want to lose that delicious smell, but I have done it a few times over the last two weeks and it was absolutely dreamy.

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Smelling those unwashed shirts is pretty much what helped get me through the last couple of weeks.  I believe I mentioned in my last post … The Worst Blog Post Ever … that Jaime’s grad was right around the corner.  I was feeling rather down in the dumps because Ben had to miss it, but those t shirts helped keep him close.  Well, that and the fact that I had this brilliant idea…

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She got to have her dad there anyway!  Awesome idea, I know.  I patted myself on the back for that one.

Jaime had a good time at her grad and it was slightly easier than I had anticipated.  Lisa O and I reminisced about our own grad together twenty nine years ago (yikes) and how we had looked better then our kids did.  Here’s a picture of Jaime and Jack O:

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It’s weird to see our kids graduating together.  That wasn’t something I saw coming all those years back when we were toilet papering our high school like the dangerous rebels we were.  Mind you, I never saw a lot of things coming.  Life likes to surprise us, it seems.

Here’s Jaime and I together.  Prom buddies …

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I was way more fashion forward, with much better hair.  🙂  God I miss the 80’s.

Since it was such a momentous occasion I’m going to throw in a few more pics of my sweet girl who has shown more resilience in the last two years than adults twice her age. That will carry her far in life.  I’m very proud, incase you couldn’t tell.

And last but not least, the Saint-Onge quasi-adults posed together to take a big ol’ “Fuck You, cancer” picture.  (With a small “c”)

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Ben would be so proud.  Damn right.  I’m pretty proud of what we made together. Thanks for that, Ben.  I will have this picture framed because it just screams “We are Ben’s kids!”  I love it.

Grad was not the only momentous occasion that took place around here in the last couple of weeks.  One of those momentous occasions was the day I officially surpassed Ben in age.  I am now 47 and The Titan was a mere 46 years young when he died. Suddenly 46 seems so much younger than it did not long ago.  Now it seems that he was just a baby.  Now it really seems fitting that we chose the line “And we wept that one so lovely should have a life so brief” for his grave stone.  His life really was so brief.

I was digging through some memories and found the last card he ever gave me.  My 45th birthday card, not long after he found out he was dying.

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Ben, if you ever read this I just want you to know that I know how hard you worked at being there for me.  I know you would have stayed forever if you could have. Thank you for trying so hard. I read a quote the other day that said, “You were my greatest hello and my saddest goodbye.”  That pretty much sums up the beginning and the end, but it misses the middle part, which was the best part.  I’ll always be grateful for the middle and those memories will forever make me smile.

Anyway, the other momentous occasion that took place since The Worst Blog Post Ever was a happier one.  Our boy turned 21 years old.  Wow.

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We did what we Saint-Onge’s do best.  We threw a BBQ.

And that’s the last couple of weeks in a nutshell.  Now here we are on June 8th, exactly two years after Ben’s surgery.  You can read about that scary day if you click here, but personally I think I will just skim past those memories, myself.  I don’t feel like going there right now.  Instead I will pack it in for the day, curl up with a t-shirt, and look forward to some sun (hopefully) and another celebration this weekend. (Yay Kirby!)

I love you too.

 

Sleep And Breath Elude Me

I do a lot of walking to relieve anxiety.  Yesterday I went three times, and still I woke up in the middle of the night gasping for breath.  I have no idea how to fix this problem, aside from the hand of God reaching down and curing Ben.  Most of the time I feel like I am in the middle of running a marathon.

Today I will be in the hospital for my own annual cancer check, which is always a stressful time on its own.  This will be the first time I have undergone this test since Ben’s diagnosis, and the anxiety leading up to today has been intense.

Ben is doing such an amazing job of hiding his pain for the kids that they really don’t realize how much he hurts.  That means that their lives continue on (a good thing), which means they continue to experience the same ongoing teen angst and problems as they normally would.  THAT means that in addition to this current shit storm that is our life, we still have to deal with crying girls having friend problems at school, exam anxiety, boyfriend problems.  Let us not forget that our sweet boy remains a recovering addict – doing wonderfully, but it would be ridiculously naive to think that he does not have his own struggles.  His safety is also our priority. Raegan has nightmares.  I have nightmares.  These are very real problems that cannot be ignored or pushed aside because of cancer.  We have to continue to keep our family safe and protected, but this is all enough for us.  No more.

I cannot take on anyone else’s anxiety or hurt when I cannot breathe myself.  I cannot take the time to imagine anyone else’s pain when I can barely fathom my own.  You must not ask me to.  I think it must seem natural to reach out to the person closest to Ben to discuss the pain that so many people who love him are feeling, but you must not.  Not right now.  I can take on four people’s hurt … Ben, Zak, Jaime and Rae.  That’s all.  My limit has officially been reached.

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Our trip was fantastic and I’m so glad we went, but the pain followed Ben and when he hurts, I hurt.  It keeps him awake and tossing and turning, and the tossing and turning itself is painful for him.  With every turn comes a moan of pain.  How I despise this disease.  I am angry this morning. Or possibly just sad.

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I think I feel about the same as this little one looks.

Yesterday this was on the news:

http://www.ctvnews.ca/health/b-c-doctors-turning-to-dna-to-develop-personalized-cancer-treatments-1.2583777

This is the trial that Ben is in.  Another person has taken an amazing turn for the better after being placed in this trial. I am happy about that.  Ben needs something to start shrinking that tumour.  He needs pain relief from something other then constantly increasing his medication.

I am going to walk now.  And try to breathe.

Wendy

**Update** My own check went fine and the drugs knocked me out for most of the afternoon.  Lucky me 🙂

Lost in Translation

So we made it to Vancouver General Hospital on time with a severe lack of sleep: me with none (I was in too much pain), Wendy with very little because I kept lamenting all night long. I’m not kidding. It felt like Osama Bin Laden was stabbing me in the ass and leg all night long. Let me re-state that…ALL NIGHT LONG. No breaks. I even doubled up on breakthrough pain meds and they didn’t even touch it. Anyways…

We made it to the hospital, got checked it and I finally got a bed in which I could lay in my sexy hospital gown which we took an unusual amount of time to figure out. Wendy kept saying “stop showing your ass!” and I kept saying “I don’t give a shit. I’m in pain, I don’t care.” To which she would reply “Shhh…don’t swear so loud”. And on it went until I was finally wheeled away to the Radiology unit.

I was attended to by a male nurse who was kind enough to give me more pain meds – which incidentally didn’t do shit. I was then briefed by the Radiologists who would be performing the procedure: Dr. Munk and Dr. Radu. They were accompanied by a male that Wendy and I finally decided was simply just a nerd. No better description for this guy. He simply stood there looking nerdy. He wasn’t even dressed like a Radiologist. I didn’t think that there would be nerds roaming about freely in a hospital. It was cool to see one. It was kind of like seeing a leprechaun. Maybe we’ll get lucky. Anyways, I waited another half an hour before being wheeled into the operating room itself and put to sleep.

I woke up in the recovery room and to my surprise, I was not in pain! Osama Bin A Huge Asshole was gone!! No stabbing pain. My sacrum felt completely normal. I could still feel a slight tingling in my right pelvic bone and down my leg but otherwise I was in no pain. I was super-tired though and the nurse thought I was drowsy from being sedated. I kept trying to tell her that I hadn’t slept at all the night before and I just wanted to sleep. She kept telling me that I wasn’t breathing deeply enough. I wanted to say “Why don’t you go away and let me sleep!!!!” but instead I just fell asleep. Of course, shortly thereafter I would be woken up again and on it went…

I finally got to the point where I had to go to the bathroom. “Excuse me nurse, but could I go pee?” She told me that there was no washroom in the recovery area. “What!?” I told her I really had to go pee so she went and found me a bottle to pee in. Hold on a second. Let’s go back. There isn’t a washroom in the recovery area of the hospital? How stupid is that?? Do everyones bowels and urinary tracts just shut down when they’re in recovery? That has to be re-thought.

Anyways, I resigned myself to peeing in a bottle. The nurse was kind enough to curtain me off in my little corner. So there I sat, on the edge of my bed, trying to pee in a bottle. Did I mention that Wendy was standing beside me talking on her cell phone? I know!! She’s in a hospital, talking on a cell phone. Surely that’s disrupting some medical equipment. It was also disrupting my sense of flow, if you know what I mean. It was bad enough sitting on the edge of my bed in a huge dormitory-like room listening to the hustle and bustle of the staff while I tried to pee in a bottle.

So I did what any normal person would do and told her to get off of her damn phone. Maybe even leave my curtained-off room and let me pee in peace!! She did the next best thing, she turned around and lowered her voice. I sighed (what else could I do), closed my eyes and tried to picture a waterfall. Ahhhh. Then I heard Wendy say to the nurse “I think he fell asleep sitting up.” At which point the flow stopped. I said “I didn’t fall asleep! I was trying to pee!” The nurse took off. I closed my eyes again and focused on the waterfall. Ahhhhh. Then I heard the familiar voice of Dr. Radu, who was now peeking around my curtain. WTF!? I looked at him and said clearly “I’m just trying to use the washroom, can you just give me a minute?” To which he simply nodded and entered my curtained-off space and started talking about the procedure.

Something must have gotten lost in translation. I didn’t quite know what to do so I just kept on peeing, with the bottle (and my youknowwhatimtalkingabout) pointed right at him. About a minute into his explanation he finally looked down and put two and two together. I think I saw the universal facial expressions “Oh Shit!” and “Oh well” because he almost didn’t miss a beat and kept on talking and I just kept on peeing.

He said that they had cryo-somethinged the tumor in my sacrum and filled in the fracture with cement. Essentially rebuilding my sacrum with cement and partially killing the tumour doing the damage. Only partially though. They couldn’t get it all without causing severe nerve damage. They also performed a general nerve block in the area of the nerves that are causing me issues. He left his number in case of an over-night emergency and filled in the discharge papers.

So off we went, almost pain-free, trying to get me to Sushi Avenue in Langley. Had I mentioned that it was 7pm and I hadn’t eaten all day? I was starving.

That’s enough of this tale.

Lastly, let me state that there will be no reply to my darling’s love letter. That will remain “in-house”.