Music, Layaways and a Little Something Else

I have so much to say I don’t know where to start. So I guess I’ll just start here…

I became aware of another band coming to Vancouver that I’ve always wanted to see in concert. I enjoy their music but I’m certainly not a superfan. From what I’ve heard, their concerts are full of props and theatrics and are just great fun, so I set upon the journey to acquire tickets.

I didn’t want to get shut out of the whole ticket purchasing process by the scalpers so I decided to find out if the band had a fan club which I could join. Sure enough, they did. So I dug out my credit card and paid their fan club fee of 30 GBP (Yes, the Queens money). Then I sought out their fan club pre-sale section and learned that the fan club could purchase tickets a clear 3 days before the general public and that fan club ticket sales opened on October 14th at 10AM. That was kind of shitty news because I knew that I would be at the Cancer Agency meeting with Dr K and getting “news”. That whole day unfolded slowly so it wasn’t until about 5PM that I was able to sit down and search for fan club tickets. Anyways, I managed to get tickets right beside the stage, 17 rows up. They look pretty awesome but we’ll see on concert night! Oh yeah, I forgot to mention that the band was Iron Maiden…

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Next is a recent purchase (layaway actually). I often stop into my local Long & McQuade music store to check out their guitars and buy strings and things. Well last Monday a particular guitar caught my eye. It was a Gretsch G5620T in blue. I normally don’t care for Gretsch guitars because of their neck profiles, but this one was different. It felt really good in my hand and was very resonant. I don’t normally buy new gear. I stick to used because you get good gear for half the price. So I hung it back up and left the store.

I came back on Wednesday because I had forgotten to buy strings on Monday – probably from being distracted by that Gretsch. I picked up my strings and had another look at the Gretsch before leaving the store.

After humming and hawing for the evening, and recalling a time where I wanted a particular guitar at Long & McQuade but waited a day too long and being told that someone had literally just left the store with it, I decided to put the Gretsch on layaway. I have a separate bank account that I use for buying and selling guitar stuff. I usually make money on gear and as it accumulates, I decide on what I want to buy. Basically, it’s separate from our family finances and I have an agreement with Wendy that I would only spend my guitar money when I want something. I didn’t have enough money in it to buy the guitar but I currently have a bunch of stuff for sale, so I was confident I could pay for the guitar in short order – as my items sold. So I drove over to Long & McQuade, found my favorite salesman and asked him to put the Gretsch on layaway for me. Unfortunately, I couldn’t find a stock picture in blue. Mine is blue.

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And now for some not so good news. I’m not sure if Wendy had mentioned an experimental procedure that BCCA was currently studying that involved a lidocaine infusion. Anyways, long story short, they attach an IV and infuse the patient with a bag of premixed lidocaine – the same stuff Dentist’s use to freeze your mouth. In this case the thought is that the lidocaine would provide a general anesthetic-like effect on the affected nerves, and the patient would get relief for weeks if not months.

Well sign me up! I can only dream of being pain free for any extended period of time. So I was scheduled for yesterday, October 15th at 10AM. I made it to my appointment on time and got set up for my treatment. Rob was there to drive me home after the procedure. Apparently, there was a chance that I may feel numb and disoriented along with some other temporary side effects. He showed up at 10AM expecting, like me, that the procedure would happen in short order. But…There were a number of delays one of which was a blood test that hadn’t been done. I guess they needed to check my potassium levels before the infusion. Why? I have no idea. Then they had to line up a pharmacist to brew up the mixture and a nurse who could check my vital every 10 or 15 minutes. They managed to get all of that done by about 1 or 2 PM and then the infusion finally started. I got to spend most of the day with my favorite father-in-law. Out of all of my fathers-in-law, he’s the best.

So the infusion was finally finished. My tongue felt a little tingly, my mouth didn’t want to work properly and I slurred like a drunk. Probably not as bad but close. The nerve pain in my leg was gone and I could only feel the muscular pain of unknown origin that has been haunting me for several days, maybe even a couple of weeks.

I met with Dr H who went over my symptoms with me as well as what I could do for the muscle pain until that one is figured out. She was happy about the nerve pain resolution in my leg but didn’t come across as confident that the procedure was a success. I was advised of two other procedures that could be done (won’t bore you with those) and then I was released. Besides feeling kind of drunk, I felt pretty good.

Until about 7PM. That’s when the new pain started. I was sitting down playing the guitar in the living room and Wendy was trying to surreptitiously record me in action. We had a we bit of an argument over this when it felt like my foot caught fire. Yup, that’s what I said. Hurt like a son of a bitch. Then the pain extended to my knee and ass. I quickly shut everything down and “ran” into the family where I asked Wendy to wrap my foot in ice. The I needed another ice pack for the muscular pain in my upper leg as well as my burning ass.

It was a bit of a gong show until Wendy and I managed me upstairs into out bed and wrap me up in a combination of ice packs, comforters and an electric blanket. I was shivering, my foot was on fire, my ass was on fire, the muscles in the upper leg were in spasm and screaming in pain. Then I just lost my mind. It was too much. I didn’t know what to do, Wendy didn’t know what to do and I was in so much pain I was losing my mind. That’s when the self-pity and crying came. Let’s not forget anger. I knew it was the wrong place to go but at this point I just wanted to die. It’s bad enough that I have cancer, but do I have to be in so much pain all of the time? Do I have to be robbed of sleep every night? Do I have to be prevented from enjoying the one hobby that I have? I can’t even sit down for more than 20 minutes or so to play the instrument that I love playing. I was caught in a whirlwind of pain, anger and self-pity. I eventually took enough hydromorphone to pass out for an hour or so. And continued to do so every two hours as per the Drs orders.

I woke up this morning still in pain, but the normal stuff that I felt before I went into the BCCA for the lidocaine procedure. The muscular pain is still very painful, but at least I’m not on fire anymore.

That experience took a lot out of me and brought me to a pain threshold that I don’t want to experience again. Today I am tired and sad. I hope to continue recuperating and eventually put a smile back on my face. But right now, it’s too much to ask.

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Fear Be Damned!

I find myself struggling to write a post, which is weird for me considering how much I like to talk.  I spend a fair amount of time feeling scared, which seems to thwart the flow of words (although I was still able to come up with “thwart”).

Since I last posted, we have met with the oncologist and Ben has had his CT scan.  We all know how that turned out.  No need to rehash it.  The poor nurse is still recovering.

The meeting with Dr K was on the 1st of the month, so we drove down to Vancouver and listened to an episode of The Fighter and The Kid while we were en route.  Lo and behold, this happened:

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What is this, you ask?  This is a photo of Ben driving along and hearing Bryan Callen start discussing him (Ben) on his podcast.  Yes indeed.  That is what happened.  Even better, when he was describing Ben on the podcast, he referred to Ben as “an older gentleman. Maybe 45 (yrs old).  Maybe 50.”  Bahahahahaha!  Then he went on to describe how Ben’s wife looks about half his age and he wondered how Ben had ever been able to snag such a good looking woman.  🙂  Thats a lie.  He barely mentioned me, and what he did mention he got wrong.  But I would prefer to gloss over that part.  You can listen to the podcast yourself –  Ben can tell you in which episode it was that he was mentioned, and how to download it.

Anyway, we arrived in Vancouver and Ben made his regular blood donation, and then before meeting Dr K we did this:

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Thats right …. lunch at Las Margaritas in Vancouver with The Son.  It was good, but to be honest it was not quite as good as last time, and Zak ate most of the free chips which was a bit annoying.

From there we met up with Dr K, and slammed him with many questions / comments.  This is what Dr K sees waiting for him when he enters our room:

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That is in addition to myself, but I’m behind the camera so you don’t fully see what Dr K sees.  Four of us, lined up with our folders and our printouts, and a zillion questions to go with each one. Dr K spent a lot of time with us.

On the up side, he commented how awesome My Man looked.  It had been quite awhile since we had seen Dr K because he had been away for an (unreasonably) lengthy vacation, so he was pleasantly surprised at how good Ben looked.  I’m fairly sure it is due to all the juicing I do.  I spend a lot of time over that juicer, trying to get mega doses of vitamins and antioxidants into Ben.  It seems to have made a difference.  I mean, just look at him!

In any case, we did inquire about another clinical trial and the possibility of getting Ben into it.  Dr K said he thought it would be a great trial for Ben if he qualifies, as there have been some positive results with different cancer types.  He will look into whether or not the trial will take Ben.  Then, as I do every meeting, I pulled out the rest of the papers I had researched and printed off the internet and handed them to him one after another.  That part of the meeting went something like this:

Wendy: asks Dr K to look at her newest research findings and not to bother wasting time explaining the ‘why’… just give a ‘yes’ or ‘no’ as to whether or not it is anything worth considering

Wendy: hands Dr K first piece of paper

Dr K:  “No”

Wendy: hands Dr K second piece of paper

Dr K: “No”

Wendy: hands Dr K third piece of paper

Dr K: “study is too early to be of any help”

Wendy: hands Dr K fourth piece of paper

Dr K: “No”

You get the picture.  Next time I’m going to throw some pics of naked women in there amongst the pages, just to see if he’s actually reading them.  Haha.

We discussed the fact that Ben was having his CT a few days later, and came to the agreement that he would not phone us with the results.  Rather, Ben would show up on the 5th of the month for Part 1 of chemo Round 4, and then we will return on October 13th for Part Deux of chemo Round 4 and we will have Dr K paged so he can go over the results with us.

I gave Dr K some instructions.  (a) do not give us bad news without having a follow up plan ready to go  AND (b) give us good news.  (insert lame laugh here.  Along with prayer.  “Please, please, please God … make things right so we get good news”)

We returned on October 5th for chemo.  That looked a little like this:

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That is a picture of Ben getting chemo whilst listening to The Fighter and The Kid podcast, whilst wearing The Fighter and The Kid t-shirt.  He posted that first picture on Instagram and Brendan Schaub (other half of Bryan Callen) reposted it on The Fighter and The Kid Instagram page, and then it got 549 likes!  And a lot of prayer and well wishes from around the world.  Like this:

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You will note that the last comment in the last picture comes from Ben who says he WILL NOT GIVE UP THE FIGHT!

After chemo we went home where Ben had some girl time …

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…. and then got very tired and full of pain.  Agony, actually.  And his shitty chemo reaction that is like having the flu … he shakes and shivers and can’t get warm, and the shaking makes him hurt all over.  Nasty, vicious cycle.  On the advice of the lovely Joanne Johnson, I went and purchased him an electric blanket.  By the time I got home he had stopped shivering and it has yet to be used.  BUT it will be ready to go on Tuesday after Part Deux, Round Four chemo.

The next part of this story is not a lot of fun, so I will gloss over it in one paragraph and just type the key words and phrases.  Pain.  Suffering. Unable to walk. Needs a cane. More pain.  Pain at a 10 out of 10.  Many emails and phone calls to doctors.  You get the picture.  And then suddenly, it stopped.  And Ben had about 2 blissful days with very manageable pain levels and he no longer needed the cane.

Now, the pain is creeping back.  As I type this, Ben is upstairs in bed.  The pain seemed to be manageable when he went to bed. Whether or not he is able to sleep is anybody’s guess.  I’ll wait a bit before crawling in beside him so that I don’t disturb him if he is sleeping.

I had this made for him.  An early Christmas present.  And I gave it to him.  I no longer believe in waiting.

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It will be hanging on the wall as soon as Ben (or someone else)  can remove what is currently on the wall and hang this in its place.  (I have some metal cut outs on the wall in the place where I want to hang this and I cannot figure out how to remove the magnetic part).  For now it leans against the couch for all to see when they walk in.  I want it hung ASAP so it inspires Ben daily.

On a family note, Zak bought his first car and Ben got to help him do that.  I was very, very happy.

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I also wanted to mention how truly grateful and moved I am when people leave random messages letting us know they are praying for us.  Kevin S … I know I have yet to return your call, but the message you left on our answering machine brought me to tears.  Thank you. It not only made us feel cared for, it made us feel hopeful.  Debbie…. you too with your facebook message.  Thank you.  I know I am not very good at getting back to people right now, but please know that I love the messages.  I really, really do. They mean so much at a time where it is very easy to feel very alone.

Happy Thanksgiving everyone.  Live with gratitude.  Pray for good news about the CT scan on Tuesday.

Well, will you look at that.  I guess I managed to write after all.  Fear Be Damned!

For Heaven’s sake….hug your family.  xox

Life B/c and A/c

I am starting to think of life in terms of B/c (Before cancer) and A/c (After cancer).  I still refuse to capitalize the ‘c’.  (Don’t worry…I’m still just as anal as I ever have been about spelling and grammar.  This error is on purpose.)

The B/c and A/c works something like this:  I find an old shopping list laying around and I think to myself “oh, I wrote that one B/c. Back when life was normal.”   Or I’m watching a particular tv show and I think “Ben used to download this for me, B/c.” You get the picture.  Probably not the most productive use of time, but its what life has become.

Last week was good.  This week…not so much.  The anxiety of waiting for surgery is taking its toll, and Ben seems to be having some side effects from the medication.  He is really, really tired, which is good in the sense that he is finally getting some sleep, but not great when he is trying to take care of business and spend quality time with the kids and I before surgery.  I emailed our GP about an hour ago to discuss the side effects that Ben is experiencing and inquire if we should be heading off to the hospital.  Hopefully we are able to just go and see him today. Neither of us relish the thought of sitting in the hospital emerg all day.

We do not yet have the PET Scan results.  Our oncologist is away at a conference on kidney cancer that ends today (I think) so we should hear soon.  Like I said before – I don’t really see the point in finding out the results before surgery anyway.  I hope he doesn’t call.

On the upside, Zach celebrated his 19th birthday on June 1st, and despite all that is going on, it made us very happy.  Seeing how far Zach has come in the last year provides us both with a huge sense of relief and pride.  Unfortunately, with that comes some stress and anxiety about how Zach will continue to handle all that is happening, and whether or not he will succumb to the stress he is currently experiencing and go back down that terrifying path he was on.  He is surrounded by love and a lot of support, so we remain optimistic that will not happen.

Here’s a couple of pics from his 19th birthday BBQ.  It was so much fun to have his friends over for a ‘normal’ time that we never got to experience in the past.  The day Zach finally reads this blog, we want him to know how thrilled we were to host that party, even though Dad fell asleep (!).  Beyond thrilled.  It literally filled us with joy.

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Here is a picture of the cake his friends surprised him with:

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And some sibling love while he opened his gifts:

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So that is three “A/c” birthdays down, one to go.  (Mine was squeezed in there too, but turning 45 doesn’t have the same thrill as turning 19.)  This blonde beauty turns 14 in a few weeks:

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Tomorrow we have managed to get an appointment with a naturopath downtown.  The wait to see this guy is at least 6 weeks, but they had a cancellation so we are in.  Thank Heavens.  This naturopath only sees cancer patients and he will work in conjunction with our oncologist.  He is not cheap, and our benefits do not cover naturopathic treatment which annoys me to no end.  (Turns out it is not cheap to get cancer in Canada. Who knew?) It is widely accepted now that there is a place for eastern medicine to work in conjunction with western medicine.  We are so far behind the times here in Canada.  Regardless, we will figure it out like everything else.

On Friday we will be at VGH for a consultation with the anesthetist and the nurses who will take care of My Man during surgery. I hope that Ben leaves there feeling more reassured.  He is scared of the surgery.  It causes me a lot of pain to see Ben afraid. I have discovered that when you love someone more then yourself, it actually physically hurts you to see them in emotional distress.  I sometimes just want to spontaneously lean over and toss my cookies on the ground.  I so wish I could take that away from him and carry the weight for him.  If there was one thing I could do for him right now, that would be it.

Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.   Matthew 6:34  I try to remember this.

Just to add to the craziness that is the Saint-Onge’s lives, this girl finally had her long awaited appointment with an allergist who discovered that she has many significant allergies.  She is now on a strict elimination diet (not so easy for me to monitor or prepare for right now) and therefore is very cranky.  I don’t blame her.  She basically gets to eat rice and canned peaches.

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I look forward to the day when life is a bit smoother.  Life without challenges is a bit boring, but boring might be nice for a bit! In the meantime, I try to remember:

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We have hope, and in addition we have a LOT of love.  So there’s that.  We’ll get through, and then we’ll be able to enjoy “Life A/c.”

Love each other a lot.

Wendy xo

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