It’s Been Awhile…

Well apparently it’s been awhile since I’ve blogged. Wendy keeps bugging the shit out of me, and I keep findIng every reason not to blog. Why? It’s complicated. The straight-forward answer is that I couldn’t think of anything positive to blog about.

My visits to the BC Cancer Agency only serve to re-enforce my suspicions that by this time next year I’ll be nothing but a memory to everyone. A fond one perhaps, but only a memory. Don’t get me wrong, the people at the BCCA are very kind and helpful but they still leave me with the feeling that I’m going to die. And because of that, I haven’t been feeling very upbeat and positive.

That and the fact that I did a little googling on my very own Collecting Duct Carcinoma and found nothing but shit news. I won’t get into the details but I couldn’t find anything that led me to believe I will pull out of this. So I am doing my best not to think of cancer, and only thinking about making the best of the days in front of me.

So that’s where I’m at. No more pom-poms, false cheers or brave words in the face of this fucking thing. Just me and my disease (that could be a cool song title). I don’t know what else to do. This blog post isn’t designed to cause depression…I think I have chemo brain. My brain just doesn’t seem to work. Normally witty things just come to me but there seems to be some kind of roadblock happening. Anyways…on to bigger and better things.

Tomorrow night I am taking Raegan to the Dave Matthews concert here in Vancouver. I’ve been wanting to see him for years. I used to be a bigger fan but that seems to have faded somewhat. I still like his music but maybe five years ago may have been better timing. Anyways, we will enjoy it together. I’m looking forward to it.

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On September 11 Zach and I will be going to see the Foo Fighters. My very favourite band. If I ever grow up, I want to grow up to be Dave Grohl. What a guy. I love the energy of that band. Some may say that I am too old to like the Foo Fighters, to that I say “Piss off”. I love those guys. Period. We are both really looking forward to the show. Should be awesome.

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And the big surprise is…On September 24 my bride is taking me to see one of my favourite artists ever…Doyle Bramhall II. Yup, I know. No one knows who he is right? Right. Well I do, and I think he is awesome. Google him, he has a decent resume. He and Charlie Sexton formed the Arc Angels in 1990 and had a few hits on the blues rock charts. He then went solo in 1996 with his self-titled album Doyle Bramhall II. Then in 1999 he released Jellycream. Then released a follow-up album Welcome in 2001. Since then he has been working as a gun for hire and has quite a few big names on his resume: he has toured with Roger Waters (Pink Floyd), Eric Clapton and a host of other artists. Anyways, he is playing at a small venue called the El Rey Theatre in LA. We are flying down on the 23rd, catching the show on the 24th and flying back the next day.

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Wendy LOVES his hair. I do too actually. If I only had hair…

I had been following his events calendar for some time and was considering flying down to Texas and catching one of his shows in Austin. But with three kids and a mortgage it was hard to justify a trip like that. But with Cancer – what the hell!! Can’t wait!!!

Wendy tells me that she’s been in touch with the man himself. I’m looking forward to seeing if anything comes of this contact. I’m hoping to meet him. We’ll see. I don’t know exactly what I would say to him but…it would be cool.

Anyways, I think I’m done with this post. I may be back again…We’ll see.

Sadness … Go Away

I am sitting in Starbucks, writing this on my phone while Ben sits at home.  Alone and in the dark, because our power is out.  Our phones aren’t working at all, and Starbucks provides wifi so I came here to find out what the internet says about the power coming back.

Instead of going on the Hydro website, I sat down, took one look around and promptly burst into tears.  So many people smiling and chatting.  Such normal lives.  This is so embarrassing, but I am just so sad.  I can’t seem to stop.

Half the town is in here – they probably all think I was just dumped.  I look like someone who has just been dumped.  And my hair looks awful (I just caught a glimpse of my reflection).  Everyone is probably thinking “if only she had put a little effort in with that hair…she may not have been dumped.”  Ha.

I don’t like telling people I’m sad.  Especially my family.  I know they are suffering their own horribly broken hearts right now, which makes me feel so much worse.   I do not want to add to their pain.  If I could individually block them from this one post, I would.

Ben, Mom, Dad, Barb, Lisa …..I’m sorry.  I’m so sorry.  I will regret posting this, I’m sure. I just can’t help it.  I’m. Just. So. Sad.  For the moment.

Ok.  That’s enough. I have cleaned up my face and even fixed my hair a little.  Crying time is over.  I will go home now and talk to Ben about how we can enjoy our day tomorrow.  Perhaps we can pull the hair out of the drains.  Nothing says love like working together to unclog the drains.

To my family – that was just a moment.  It’s over now.  I’m ok.  Nothing a hug from Ben and a big glass of wine won’t fix!  I will go get both right now. 🙂

Ben – don’t you dare complain about me being sad and posting about it.  I know you don’t like me to be sad.  It was just a moment.  I’m over it.  If you need me to prove it, I will come home and list a few things about you that still annoy me.  You are still not perfect.  Me, on the other hand….well….

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Hug your families.  Xo

Wendy

So Much Pain….

Poor Ben.  Not even six hours post chemo and he is writhing in pain.  Literally writhing in pain.  Worse then this:

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Don’t ask me why this always happens.  No one seems to be able to give us an answer.  It just seems as though his pain is greatly exacerbated by the chemo.  The meds really don’t touch it.  It might even hurt this much:

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Yuck.  Anyway, to save myself time I am going to copy most of my recent FB post into this blog, since it has an outline of the better part of our day.  Here it is:

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Isn’t this what everyone does on a Monday afternoon? Mexican food followed by chemo.

As usual, Ben stays in good spirits (well, at least for the camera, but that’s something) despite the issues today.

For example, our first appt was two hours late by the time Dr Cocky McArrogant breezed into the room for 30 seconds and diagnosed Ben’s hearing problem without asking any questions. Much like Crown Counsel, Dr Imso Important clearly hadn’t read the file before walking in the room, because you know his time is much more important then ours.

After that we had issues with Ben’s consent forms for the clinical trial. The same forms that I handed in a couple of weeks ago and said “please please please don’t lose these. They are very important.” Yeah, well, I’m pretty sure the cancer agency “misplaced” them and totally forgot he was supposed to be entered in the POG trial at all. I kicked up some dust today and remedied that. Supposedly his biopsy will now be next week. It should have happened a week ago, so I guess we’ll see.

Anyway, he’s sitting in the chemo chair as I write this. The drama continues, as the chemo nurse had tons of problems getting the IV in. (Cal Traversy, please tell Whitney she needs to transfer to VGH and take care of Ben). Apparently Ben has “crooked veins.” Seriously. Crooked veins. Who has crooked veins??!! What kind of genetics did I marry into?!

He’d better not pass on any of these weird defects to our kids. Crooked veins, funky chromosomes… Ben Saint-Onge I may sue you for failing to provide full disclosure before our wedding day! You definitely led me to believe you were pretty close to perfect at the time. 😏. Now it is too late to toss you aside. I am apparently stuck with you. The statute of limitations for suing one’s spouse for failure to provide full disclosure runs out at the 20 year mark.  Too bad for me.

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There was discussion about putting in a portacath for the next while so they can stop poking him. Also, the drugs cause a lot of pain in his hands so a portacath may help with that since the drug won’t go into his hand. If you want to see how much his hands hurt from that damn drug, try patting him gently on the hand under the guise of comforting him. You will learn some new swears. Lol.

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There will be no personal visits for awhile – Ben’s white blood cell count was down to 1.3 today. It is very likely to now go right down to zero which makes him extremely susceptible to infection. We have BIG plans coming up and we don’t want them messed up! So texts, phone calls etc are all welcome – just no personal visits.  Ben does read his texts and emails….sometimes it takes him a while to respond.  Please don’t take that as a sign he doesn’t want to hear from you….he’s likely just sick and / or trying to rid himself of pain.  In fact, random “feel better” texts, stupid jokes and / or funny pictures that make him laugh will be extremely helpful in keeping his spirits up this week.  His body is doing a lot of work right now:

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So thats it for now.  Ben will likely be preoccupied the next few days with feeling really crappy, and I will likely be preoccupied with cleaning up vomit.  Perhaps after that, Ben will feel well enough to disclose Surprise #2.  In the meantime, lets just say that we intend to

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Thats right.

PS. We have decided to always pronounce ‘chemo’ with a “ch” sound. Like CHew or CHoice. Because it makes us laugh. So when you see me write “chemo”, make sure you read it as you know we are saying it. It takes away the seriousness of it. And we are tired of chchchemo being serious. (You pronounced the “ch” that time, didn’t you? Yeah you did. 😉)

xo

Doctors, doctors, more doctors

Dear Ben,

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This morning we are headed downtown for a hearing appointment.  I’m not even really sure why, since Ben is no longer taking Cisplatin (you recall that asshole drug).  But in any case, the appointment was made, so off we go.  From there, Ben will have his blood tested again to check his white blood cell count …. fingers crossed that it is ok.  It will be ok.

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Once we know that his white blood cell count is ok, he will kick back, drink a coffee and get filled with what I like to think of as Nasty Mutant Cell Killer.  Not fun for Ben, but a necessary evil.

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On another note, there is a wildly amazing Surprise Number 2, but I’m not going to announce it yet, in the hopes that Ben gets on here and tells you about it himself.  Lets all work on convincing him he needs to write!

All prayer and crossed fingers is welcome today.  Chemo is not easy for Ben, despite being a true superhero.

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And off we go.

Wendy. xo

Surprise Number 1


Check out the smile!

That’s Ben enjoying the beautiful reclining chair that our Mama and Papa were kind enough to bring over last night to give Ben a comfy place to sit.  He can never get comfy because of the pain …. and now he can!  Hopefully this will solve the one problem that has been plaguing us.  (Well, that and the whole cancer thing….)

Thanks Mom and Dad!  You are the best.  That was so generous, and so thoughtful.  We really, really appreciate it.  Check out how happy you made him!  You delivered a Happiness Bomb! Woo hoo!

And in addition, Rae got to be a rebel, break the law and do this… Shhhhhh


We will never tell….

Everyone should ride in a recliner in the back of a pickup  truck, one time in their life.  Don’t worry….we just circled the cul de sac, but we will always pretend we went on a full road trip.  😏

Family. Chemo. Trucks. But Mostly FAMILY.

I think I mentioned awhile back that we had to cancel holiday plans this summer.  That in itself wouldn’t have been the end of the world (we’ve discovered there are certainly far worse things in life then a missed vacation), but this year we were particularly looking forward to our first vacation in years with Zak.  Finally, after so many incredibly challenging years during which we lived in constant fear of losing our son, life had turned a corner and this was going to be quite the celebration for the five of us.  So yes, in fact it kind of sucked that we had to cancel our holiday plans.

Still, there was no point in wasting tears over something that couldn’t be changed, so instead we promised the kids a “Stay-cation”  where we would explore Vancouver like tourists.  They handled the news like troopers.  (Duh…they are Saint-Onge children.  They are nothing if not resilient.  And besides, the girls had just spent a week at the lake with friends, so they knew better then to complain)   🙂

Saint-Onge Stay-cation was due to start on Monday the 17th, but then that damn cancer and that damn low white blood cell count got together to mess with our plans yet again.  Chemo was postponed – set to take place on Monday the 17th.  Sigh.  So that sucked again, but when life gives you lemons …. well, you know the rest.

Instead of making lemonade, however, we kicked off Saint-Onge Stay-cation on Sunday afternoon with a pre-chemo family bar-b-que.  And this time the entire family was there, which literally NEVER happens!  Thats right … Gramma, Grampa, Auntie Barbie and Makeda, Auntie Lisa / Uncle Brett / Brendan and Jenna (when does that ever happen??!!!) and all five Saint-Onges.  How about that?!  What a treat…

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Ben and Lisa                                                                          ……… and Grampa

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Grampa and the eldest granddaughters           …… and the youngest with their fishing catch

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Barb and Gramma (why so frown-y ladies?)              Jenna and Zak ….. cousin love

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 Grampa and Brett                         Lisa and Brendan                      Makeda and Zak

Somehow we adopted one extra for the evening …. who does he belong to?

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… at least he made himself useful and acted as the resident hairdresser:

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Dawson and Jaime

So much fun was had by all that we wore Ben right out!

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On Monday morning we decided to brunch at one of the restaurants featured on Ben’s current favourite tv show, “Diner, Drive-Ins and Dives.”  Thats right … off went the Saint-Onge’s to The Red Wagon.

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(Please ignore my middle child’s extremely rude hand gesture that I only just noticed now.  Its her father’s fault.  I tried to teach them proper manners, but apparently they follow the “Fun” parent’s example instead of mine)

The Red Wagon falls into the ‘Dive’ category, but I do recommend it for the food.  Not for the bathrooms (which were situated in the kitchen, and they stank something fierce), and not for the seating, and not for the lukewarm drinking water.  But the food was very good, and it was kind of cool eating in the restaurant that had been featured on the show.  Also, they post customer’s art work on their windows, hence this masterpiece:

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From there we did a little shopping, followed by a little blood work at the hospital (white blood cell count up to 3.0), followed by a little chemo.

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Don’t you just love how we make everything a full family affair?  I think the staff at VGH shudders when they see the Saint-Onge name on the appointment list.  We are very loud.  Lol.

In any case, after the chemo we headed off home where unfortunately Ben was hit with the not so lovely chemo after effects within about six hours.  He started running a fever and his temp was high enough that we had to call the hospital to see if they wanted him brought in.  The doctor was really great on the phone and decided to let Ben stay home because the fever was more likely due to the chemo drug then an infection.  So I got to play ER nurse for the night, which would have been fun if it looked like this:

f9fac98960ae0d92bbd004e5c3dd233a but instead, it looked more like this  very-tired-woman1

By the next morning Ben’s body had decided to reject all food and drink, which of course made everything worse for him, including the pain.  So basically the next 48 hours involved sleeping, barfing, and trying to shift positions to find a way to sit that didn’t cause him to poke his eyeballs out just to distract himself from the pain in his lower back.  But now that two days have passed, he is starting to feel slightly better.  Which may have something to do with the fact that we went out tonight and purchased this new addition to the family:

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Thats right folks.  The Saint-Onge’s now own a really, really big pick up truck.  We don’t live on a farm.  We don’t have any hay to haul.  We really have no practical need for a truck.  But Ben has always wanted one and quite frankly I am sick to death of driving a mini van.  So there you have it.  We own a truck.

Ben is very happy, and I take full credit for that because I insisted we buy it.  Maybe later we can buy a farm to go with it.

My advice to you (no charge) …. Hug your families.  Buy a truck if you want one.  Hope that in your lifetime, you are lucky enough to be loved as fiercely as this:

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Wendy  xo

Bad News, Good News

The bad news is that we showed up for chemo on Monday the 10th, but Ben’s white blood cell count was still too low they were unable to treat him.  The good news is that his white blood cell count was up from .3 on Friday, to .7 on Monday.  It has to be a minimum of 1.0 to go ahead with chemo (normal is 4.5 – 10), but at least it is improving.  His chemo appt was re-booked for Monday the 17th.  Hopefully his white cell count will be high enough to go ahead.  He wants to get the next round of chemo done so that he can have another scan and see whats happening.

The other good news is that Ben has a scheduled treatment appointment for Sept 9th, at which time they will cement his fractured pelvis, use cryotherapy inside the bone (we think) and do a nerve block.  Hopefully all that will help with the pain.

We went to the pain clinic this week and they suggested some possible ways to play with dosages of meds that might work a bit better.  As of today we have made some adjustments.  Hopefully that will help.  Ben had a few good days last week but the pain seems to be a bit less tolerable now, unfortunately.  Hopefully we can work that out in order to have some special time with the kids this upcoming week.

I am making some inquiries about fundraising so that research can be conducted specifically into treatments for Collecting Duct Carcinoma.  I have mentioned before that no one is looking into this disease because it is so rare.  Someone has to change that…might as well be me.  I have a few ideas and I will let you all know once I have things ironed out.  At least I would like to bring some attention to the disease that no one has ever heard of before.

Wouldn’t it be nice if enough money could be raised so that research could be done to benefit Ben?

Yes