Some Good News

Well I will just come right out and say it … tomorrow we will go to Burnaby General Hospital where Ben will receive the first IV treatment of Nivolumab. Yes indeed.  It was a bit of a battle and we owe a lot to Kirby who was beyond helpful navigating this path with us.  Not a moment too soon.  (thank you, thank you, thank you)

This chemo-the-rapey will take place every two weeks.  Dr K says it will take 8 – 10 weeks before we know if it is doing anything.  Dr Y said it would take 3 weeks to know if it is doing anything.  We didn’t much love Dr Y so we will go with Dr K’s word.

Speaking of Dr K … we paid him a visit the other day just to touch base. He was very happy to know the appointment for the Nivolumab was set, which in turn gives us hope.

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Ben has had a couple of days where the pain has subsided and he has felt fairly decent.  I love those days.  I now understand what people mean when they say their loved one has ‘good days’ and ‘bad days.’  They are unpredictable and you never know what you are going to get from day to day.

Unfortunately, today was not one of the good days though, and tonight the pain is really bothering Ben.  As I write this he has fallen asleep in the chair, but it is a troubled sleep where he moans with pain and moves around uncomfortably.  He also tends to act out his dreams / hallucinations.  Right now he is reaching for something in his sleep that isn’t there.  It would be so nice if the pain could lessen and allow him to get off some of these drugs that are messing with him.  The appointment to meet with the neurosurgeon regarding the cordotomy will be next week.  That can’t come too soon either.

Our office has been reconfigured, and the hospital bed was delivered and set up.  I realized tonight that we no longer own bedding for a single bed, but lucky for us Jackie brought some over to lend to us.  So it is ready.

On a happier note – tonight was Jaime’s winter formal …

So tomorrow we will head off to the hospital while Raegan plays in the volleyball provincials, and then Lisa is coming over to make sure that the kids are actually being fed.  She says its to visit with Ben and I, but I know what she’s really up to.

Zak is up in Powell River working for a few days.  He should be home on Saturday.  I think he escapes so that he can get proper meals.

Hug your families. xo

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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

Chemo – Round 2.5

This will not be my most thoughtful or amusing post.  Quite frankly, I’m not in the mood to write and I am not feeling particularly inspired.  I can barely tolerate watching Ben next to me in so much pain, so I plan on occupying myself (when I am finished writing) by preparing Ben’s post chemo meal for tonight.  It is a trick to get just the right food in him after chemo before the nausea and vomiting begin.

As Ben mentioned in a previous post, he had the cementoplasty on Sept 9th.  His post was funny and made everyone laugh, but the pain he was in at the time was not funny at all.  A solid 10 out of 10 for pain by the time they were preparing the room for the surgery that morning.  The nurse did administer a narcotic directly into the IV for pain, and it worked for approximately 9 minutes.  Not joking.  In less then 10 minutes he was at a 7 out of 10 for pain again.

The day was horrifying, because the two hour procedure turned into hours and hours with zero communication.  As usual, Barb came down to the hospital to sit with me but was eventually required back at her office and we still didn’t have any information beyond the fact that we were reasonably certain he was alive.  Always good to know.

I finally pushed hard for answers in the evening and was allowed down into the recovery area.  I guess they kept Ben there (where family is not allowed) because every time they took him off of the oxygen his numbers dropped.  Also, Dr Radu wanted him kept overnight and so there was that whole disagreement between VGH and the Cancer Agency.  At the end of the day, as you know, Ben came home.

Within 15 hours of the procedure, Ben was back at a 7 out of 10 for pain, and it hasn’t really eased much since. As I type this, he is suffering.

I have spoken twice with Dr Radu.  He is working hard at getting Ben back in for a more selective nerve block.  The poor guy (Dr Radu) is clearly run off his feet and I have a very strong feeling that he will be doing Ben’s nerve block on his own time. They are booked solid.  He is doing everything he can to have this nerve block done before we leave on the 23rd.  I emailed him my appreciation.  If I was his mother (Dr Radu’s mother) I would tell him “You can’t save the world and you need your rest too.”  As Ben’s wife I say “Thank you from the bottom of my heart for giving up your own personal life for the care of others.”

Yesterday Ben had a biopsy on his liver.  First step in the POG trial.  The procedure was not fun for Ben and has added to his pain.  I am praying that they now may find the answers they need to help Ben.  While he was recovering from that I hounded the poor receptionist to put notes on Ben’s file to push for a more urgent CT scan.  Ben was supposed to have a CT scan between round two and round three of chemo, so a determination could be made regarding whether or not this poison is holding off the disease.  Unfortunately, summer holidays and the number of people lugging this disease around in their bodies prevented that from happening.  The lovely receptionist has asked, at my request, that Ben be squeezed in for a CT before we leave for LA, so that the results are there when we get back.  We’ll see.  We probably won’t find out the results anyway until we meet again with Dr K, which won’t be until next month.  So in hindsight, its probably not all that urgent.

In the meantime, today is round 3 of chemo.  Well, more like round 2.5 because he is only having one dose instead of two.  Two doses would have made it impossible to go to LA.  So one dose it is this time.  One dose is bad enough.  We plan on attacking it with every anti nausea med we have.  Ben has agreed to try to keep it at bay so it doesn’t overtake him.

Despite the pain, we did manage to attend a most delicious meal at Mom and Dad’s.  A send off of sorts for Zak who was heading out of town to work for two weeks.  You will note there were a couple of boyfriends along for the ride..

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I kind of caught everyone off guard here – especially the two cranky looking ones on the left.

One last thought that I did want to write on here so everyone is aware.  Flu season is around the corner.  By mid October I really don’t want to have anyone in the house if they haven’t had their flu shot.   Thanks in advance for your consideration. If you don’t want to be immunized, no problem.  Just be upfront and honest – I will meet you elsewhere for coffee etc.

And on that note I must go buy some chicken before heading back downtown for chemo.  #prayersforben

On the day I called, you answered me; my strength of soul you increased.  Psalm 138:3

POST SCRIPT: After I signed off on this post, the Pain and Symptom Management nurse called me. After explaining how much pain Ben is in, she asked us to come down to the Cancer Agency immediately before chemo. So here we are right now, waiting for the doctor. Hopefully they can figure something out before chemo.

Also…I was unsuccessful in my quest to pick up chicken. In fact, when I got to the local grocery store and discovered that the chicken I wanted wasn’t there, I promptly burst into tears. Doesn’t everyone cry over a lack of chicken? Thanks for the hug, Linda. You should have seen the look on your face when I started crying. If I hadn’t been so upset I would have laughed.

POST POST SCRIPT:  We received the call.  Second try at nerve block happening TOMORROW!  God bless Dr. Radu.

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.

superhero tearing off his clothes -cool skin

And off we go.

Wendy. xo

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