Living Each Moment

We brought Ben home in the early morning hours of Thursday Jan 7th. And by early, I mean EARLY.  Just after midnight.  That was after waiting all day for an ambulance transport home.

After much joint effort from people too numerous to mention (but thank you all) we arranged nursing care in our home for Ben from 8am to 8pm each day.  I was overwhelmed with all the injections etc that he requires, so despite thinking that I could take all this on myself I discovered that I could not.  I want to be his wife, so someone else can be the nurse. In any case, having the nurse come in just to administer medications has been very helpful and has allowed me to stop worrying endlessly that I am going to make a mistake.

Dr B came by our house on Thursday night.  Thats right …. a house call. Have I mentioned what a great doctor he is?  Although, The Titan definitely deserves it, since he has spent his life being so strong and doing so much for others.  Its time to give back and be strong for him, and thats what people are doing.  Thanks for that, Dr B.

Ben had a very straightforward conversation with Dr B while he was here. For Ben it was a turning point.  He trusts his oncology team, but ultimately it all comes down to Dr B.  If Dr B says it is so, then it is so.  And sadly, Dr B says it is so.

There will be no more Nivolumab.  Heartbreakingly, it has not worked and the cancer has progressed.  The cancer (small “c”) has moved into the muscle of Ben’s stomach (I’m sure there is more technical and specific terminology, but that is how I understand it to be), and once in there it spread rapidly.

And so, to quote another person’s blog I follow who is in the same position as us, we have brought Ben home, not to die, but to live every moment.  I remind Ben daily that he is in fact alive.  Alive to be around those who love him most in this world, and who are most important to him.  Alive to see his beautiful children.  Alive to be reminded constantly of what a great husband / father / friend / man he is.  I continue to be astounded every day by Ben’s strength. He is amazing.  There is no one who could have fought as hard as Ben.

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Damn right he answers to “The Titan.”

 

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Wait…What? GOOD News?

Can it possibly be a tiny little Christmas miracle?  Why yes, it can! But first, a few pictures from our Sunday breakfast with Santa, courtesy of Mom and Dad …

Yes, Zak was missing – he had to work.  And none of my pictures with Mom and Dad turned out.  But it was a delicious meal and nice to be out with the family, so thank you Mom and Dad!  It was great timing, as Ben had had a rough few days and was just starting on an upswing.  We went home afterwards and he rested …

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Now, about this good news!

Yesterday Ben and I had no less then four appointments in a row  throughout the Lower Mainland (five if you count the fact that we had to renew the handicap pass), and at not one of those appointments did we receive any bad news.  So I consider that GOOD NEWS!

The first appointment was for blood work, and since no one mentioned anything about the results it is safe to assume that there were no significant or scary changes.  Good News #1.

The second appointment was with Dr Y, the oncologist in Burnaby who gets the final say each time as to whether or not Ben will receive another dose of Nivolumab.  First of all, he noted that Ben looked significantly better this appointment then he did at the last one.  Which is true.  Over the last three days or so his overall wellbeing has definitely improved. And he gets another dose! Good News #2.

Next … Dr. Y gave Ben a quick ‘hands on’ check and said …. wait for it…. that his liver felt smaller yesterday then at the previous appointment.  Yay!!!!!!! What he actually said was “I’m not a CT machine but your liver feels smaller.”  So I said, “Wait … you’re NOT a machine?  Cuz I totally thought you were a cyborg because you have no feelings …”  Kidding.  I didn’t.  But I thought it.  And then I focused on the fact that BEN’S LIVER FEELS SMALLER!!!!!!!  Good News #3.  We left Burnaby General with a jaunty skip in our step (or walker.  Lol).

From there we went and renewed the handicapped pass, which I dream of cutting up into teeny tiny pieces and throwing it into the wind.  Hopefully that will come later.

Off to VGH we went, where Ben had an ultrasound to check on the fluid in his stomach to see if it needed to be drained.  And lo and behold there is no increase in fluid.  In fact, there is hardly any fluid there at all and there is no need to drain!  And maybe, just maybe, it will reabsorb itself into Ben’s body. Good News #4.

Down the hall we went to visit with Dr K.  He was almost on time yesterday.  Good News #5.  OK, you may be thinking that I am pushing my luck by labelling Dr K’s promptness as a good news point, but if you had been sitting for hours at appointments on a regular basis, month after month, you would consider that good news too.  So…. Good News #5!

And then, in walked Dr. K.  And he was pleasantly surprised to see how good Ben looked, and commented on it too.  He also commented on the fact that I was laying in the bed and Ben was sitting in the chair, but gimme a break …. I’m tired!

Our meeting was brief and when he looked at previous scans he commented that the tumour in Ben’s “stomach” (I still can’t recall what its called where they actually found it) could in fact have been there before starting the Nivolumab.  Which means …. wait for it …. that, at the very least, there is no reason yet to assume the Nivolumab isn’t working!  Woo hoo!  GREAT NEWS #6!

So there you have it.  A Christmas Miracle that will allow us to enjoy today and tomorrow and appreciate all our blessings.

May you all be very blessed this season, and take a moment to remember why we celebrate.

Luke 2:10-11 But the angel reassured them.  “Don’t be afraid,” he said. “I bring you good news that will bring great joy to all people.  Today in the town of David a Savior has been born to you; he is the Messiah, the Lord”.

SAINT-ONGE STRONG!

 

Weeks?

Thank you to Christine and Rob who sent us in a limo last night to enjoy the Christmas lights of Surrey.  It was a great way to chill out after the  tough day we had. Ben had been unable to do the MRI earlier because he was simply in too much pain.  He ended up doing a CT, and we figured the results were less then ideal when the radiologist neatly maneuvered around our question “what did you see?”  She told us that Dr H would call us later. Hmmm.

Dr H did call later, but first we were treated to this:



Once we got home I spoke to Dr H on the phone and she explained that there had been rapid progression with the disease.  There is an additional large tumour in Ben’s “stomach” (not really his stomach, but I can’t recall the medical word she used).  Somewhere in that area.  As we later found out, there had been no sign of that tumour even two weeks ago.

This morning The Saint-Onge Five packed up and headed off to see the thoracic surgeon about the fluid build up in Ben’s chest.  He talked about doing surgery and told us it would be a four week wait to get the surgery once Ben made a decision to do it (if he decided to do it). Another option is to have a respirologist continue to drain the fluid like they did in the hospital.  We said we’d think about it, and we left.


 We drove down to see Dr H who had asked me to bring everyone in to see her today.  She said she would fit us in.  That is probably never a good thing when a very busy specialist offers to “fit you in.”
 Barb arrived at the hospital, and the six of us met with Dr H.  She re-explained what she said about the disease progression, and then she said (and I write this with Ben’s full knowledge and permission) that there is no evidence to suggest the Nivolumab is working, and if that is the case he may only have weeks to live.

We are shattered. Not The Titan.

Whew! THAT Week is Done!

Well now, that was definitely a crazy week.  It started on Monday with Ben becoming increasingly confused and saying strange things.  It was humorous at first and seemed to happen only as he sort of drifted between that sleep / awake state, so I wasn’t too worried about it.  We managed to capture a couple of pictures that evening at home.  This is my favourite:

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On Tuesday morning we went to the follow up appointment with the respirologist at Jim Pattison.  Before we left, we snapped a few pics of early morning love, since the plan was to head right to Vancouver General Hospital afterwards and we knew Ben would stay in hospital for a few days:

While we were waiting for the respirologist appointment Ben started sending some strange texts that didn’t make a lot of sense, and he began seeing things that weren’t there.  He seemed a bit ‘off’, but he had his chest xray and met with the respirologist (nothing new to report there), and then off we went to VGH to get him checked in.

The only way that Ben could get in on such short notice for a cordotomy was a planned admittance through Emergency.  We had been given instructions to go to VGH Emergency and complain about leg pain (which, as you know, was intense and often unbearable for Ben, so there was no concern about having to ‘lie’.)  However, like every Hospital Emergency Department it was no easy task getting them to admit Ben and to call the neurologist like we had been instructed to have them do.  I think the admitting clerk thought I was lying when I insisted that the neurologist wanted to be contacted immediately.  It was quite frustrating, and they made us sit in the waiting room for a long time.

While we were in the waiting room, Ben’s hallucinations and disorientation became worse. He pointed to a poor fellow in a wheel chair and insisted the he (Ben) had driven that fellow around while he worked last year.  Meaning that the fellow in the wheel chair was a bad guy.  I said “No you didn’t” and Ben said, “yes I did.”  I said “No you didn’t” and Ben said “YES I DID.”  So I said “Where?” and without missing a beat he said “North Burnaby.”  Sigh. No, he didn’t.  I’m glad the guy in the wheel chair didn’t hear.  He also asked me if I had confessed to all my criminal activity.  I just said “yes” and that seemed to satisfy him.  Then Ben started to drift off while he was sitting in a chair, and suddenly jerked and threw his IPhone onto the floor.  Thank Heavens for Otter boxes.  No damage done.

Eventually they took Ben in and gave him a lovely bed in a hallway.  Good times.  Ben slept until one of the Neurosurgeons came to see us.  He was an amazing doctor – really kind and he ensured Ben was well cared for.  He gave us his phone number and always returned our calls, and he visited Ben several times over the next few days.  (He even feigned interest when I told him the story of how Ben and I met, and said it was a good story.  I liked him.)  He looked and talked like that actor from ER (the tv show) who played the Croatian doctor.  I fell a wee bit infatuated.  Haha.

Dr. Croatian (can’t recall his name) got Ben checked in and put into a private room where Ben pretty much slept for the rest of the day and night, with a little break for Thai food brought to the hospital by Barbara.  (By the way Barb, I found the money I gave you shoved into the bottom of my purse.)

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On Wednesday morning (December 9th) I left our house at 6:15 am to ensure that I arrived before the surgery.  I got there in plenty of time, but when I got to his room he was gone.  Luckily a nurse saw me walk in and said they had just wheeled Ben over to the elevator, and that I could probably catch them.  I did, and its a good thing too because Ben was totally shaken up.  It seems that he had been fast asleep when all of a sudden a bunch of nurses rushed him, woke him up, started washing him down and talking about getting him down for an angiogram.  Since Ben was not there for an angiogram he freaked out and made them stop, which stressed the nurses out because neurosurgery was calling for Ben and he refused to go.  It was a bit of a gong show.

Eventually we got downstairs, and Dr Croatian walked in and all was right with the world.

Glossing over the details that I will let Ben tell you about when he’s feeling up to it, the bottom line is that he had the cordotomy and he was in the CT room for much, much longer then expected.  Some random doctor finally approached me and asked me if I would like him to go find out what the hold up was.  It turns out that they were halfway through the procedure and had knocked Ben out briefly in order to sever the nerve, but when they tried to wake Ben up he wouldn’t cooperate.  (Eventually he did).

The procedure itself seems to have been a success in that they severed the correct nerve, and Ben no longer appears to have any pain.  Or at least, it is much less.  However, for whatever reason Ben has been extremely weak since the procedure and is now unable to walk unassisted.  We are hoping that will remedy itself.

On Wednesday night around 11:30 pm the nurse called to tell me that Ben’s blood pressure had dropped to 89/64 and his heart rate was 140. They were concerned about a blood clot again so they took him for a CT and a clot was ultimately ruled out.  Then they moved him to a unit that is sort of an ICU but a slightly less serious version of it.  I was just pulling out of the driveway to go back to the hospital when Dr. Croatian called me to give me an update and let me know that he would not release Ben to go his appointments at Burnaby General Hosp unless his blood pressure came up.  In an effort to straighten all that out, they started giving Ben IV fluids, and by the time I arrived at the hospital things were looking up and Ben was finally coherent after three days of talking about men sitting on television sets, and reminding me that we had five children and one was named Tinzaparin.  Some of the stuff he said did give me a chuckle.  He was so out of it that I climbed into bed with him and amused myself by taking silly photos while he slept.

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Two good things happened while Ben was in hospital …. one was that his friends from Ottawa came to visit with him and spread the love (I can’t believe I forgot to get a picture), and the other was that Dr F and Dr B arranged to come visit Ben at our house after he was released from hospital, so that Dr F could bring his cool guitar to show Ben.  (As it turned out, I had to cancel them because Ben didn’t get released on time, but they are going to try again this week.  Super nice of them to offer though).

Ultimately Ben became stable enough to be transported to Burnaby General on Thursday to meet with the oncologist out there and get his blood work done.  It took a bit of convincing, but Dr. Y finally agreed to go ahead with the Nivolumab treatment the following day.  He had been worried that since giving Ben the first dose, Ben had been hospitalized twice and therefore he was assuming that it had to do with the medication.  But once I explained the reasoning for the hospitalizations I convinced him that it didn’t have anything to do with the Nivolumab.

And so, on Friday, Ben received his second dose.  Yay.  That was a happy moment, but overall Friday was a very difficult day.  Not gonna lie.

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Ben was just so exhausted that walking even short distances was too much without rest.

In any case, he received the treatment and we came home where the kids were super happy to have him back.

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Since we got home, Ben has been really tired but I am hopeful that he will slowly regain some strength over the next few days.  We have numerous appointments scheduled for the week of Christmas including “Family Chemo Day” on Christmas Eve, but most of the upcoming week is free to allow Ben to recuperate a bit and spend time with the family.

Hug your families. xo

 

Cordotomy Coming…

I finally have the brief opportunity to let everyone know what our week looks like before it actually happens.  Having said that, our best laid plans always seem to get thrown off, but it currently appears as though the plan looks like this:

Tuesday Dec 8 early morning – Ben will go for a chest xray and see the Respirologist in the morning for a follow up regarding his lungs.

Tuesday Dec 8 late morning – Ben will go to VGH to be admitted

Wednesday Dec 9 – Dr H will perform the cordotomy, which will go swimmingly well with zero complications and Ben will be pain free

Thursday Dec 10 – Ben will be released from hospital and will jog out to the parking lot while I struggle to keep up with his pain-free jaunt

Thursday Dec 10 – Ben currently has an oncology appointment and blood work scheduled for the morning in Burnaby.  He won’t be able to make this appointment so it is my plan to beg them to change it to the afternoon.  Fingers crossed.

Friday Dec 11 afternoon – second treatment of Nivolumab

Saturday Dec 12 – rest, recover, and revel in Ben’s lack of pain while the Nivolumab continues to course through his veins and heal his body.

Sunday Dec 13 – spend an hour in church appreciating what we do have, and thanking God for all our doctors, our family, our friends, the constant demonstrations of love, and all we have been blessed with in our time of need.

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Gotta love Zak’s morning ‘Elvis’ hair

Thank you, everyone. xo  This is for all of you:

Sending-Virtual-Hug-dc-77008

Today Sucked. And Christmas Is Coming

I have no idea what happened to me today.  Possibly I am just worn out, maybe I am just not getting enough sleep in the night, but today I crashed.  Crashed.  It was one of the few days when the only thing on the agenda that had to get done was getting Raegan to her volleyball tryouts by 8:30 am, and picking her up again at 11:00.  I managed to do that but not much more.  I spent most of the day drifting in and out of sleep on the couch.  I was not a good caregiver today.

I love going to Church on Sundays.  I look forward to going to Church.  I planned on going to Church today.  And in the end I just could not get myself off the couch.  Big mistake, as it is now 8pm and I still have not even brushed my teeth.

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As Ben mentioned, he had his first treatment of Nivolumab on Friday.  He has experienced the normal fatigue, but other then that he seems to be ok. We even went out on a limb last night when prepping all his meds for the week ahead, and left out the Metoclopramide which he has been using for months to prevent nausea.  I haven’t reminded him today that he hasn’t taken it, and he hasn’t complained at all of feeling sick.  So that is good news.

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After bringing Ben home from the hospital, I drove to the ferry to pick up Lisa who came in for the night.  I put her to work immediately and she helped me decorate the Christmas tree that my friends had put together for me the night before.  I knew if I didn’t decorate it while Lisa was here, it was likely to remain undecorated until I take it down after Christmas.

It is now Sunday night.  The weekend has passed and I still have not brought out the tree skirt (or any of the other household decorations), but at least the tree is done.  Thank you, Lisa.

Raegan was in the volleyball Provincials this weekend, and Lisa and I managed to make it to one of her games.  Unfortunately, that was the game where she didn’t play. Poor girl.  Or poor us, maybe.  But at least she knew we were there.

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I also managed to find a few minutes to give Jaime a ride to (where else?) Dawson’s…

… and hit up a movie with Raegan while Ben slept.  Here is the post movie picture of Ben and Rae, which is identical to the PRE movie picture of the two of them.

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I think he might have moved a little while we were gone!  Lol.

I want him to rest and let his body heal, but man do I ever miss hanging out with him.  I think it all hit me while the house was quiet today, as it sometimes does.  I looked at the tree and wondered why I have to find the energy to decorate?  Does that stuff really matter?

The tree and the gifts have nothing to do with the true meaning of Christmas. Ben and I have had many discussions about this, and we both agree that we are definitely not interested in the gifts this year. Really….who cares?  Where does all the hype fall on the scale of what is important to us now?  Way below zero.  Even the kids do not seem overly excited for the holidays, which does make me a bit sad because we usually have a lot of fun at this time of year.  How I wish life could be ‘normal’ for them. We will do our best to make this Christmas enjoyable for them, but our focus will definitely not be on the commercialism of the holidays.  I am glad that we have always tried to keep a focus on family in the past, but it is true that we have been very guilty of falling victim to the extreme gift giving.  Not so this year.

All we want  is to have peace, calm, quiet, and time to spend with each other.  Gifts with no meaning …. not interested.  There is nothing to be purchased that can give us more joy then all of us being with each other.  I am very glad that the kids are not toddlers – I think at this point I would lose my mind in the midst of that chaos.  Peace is important.

Just peace.

So this year, if I find the time to do any more decorating, then I will do it but only if it brings me pleasure. If I don’t find the time, so be it.  Gift shopping for the kids is mostly complete.  I have picked up things here and there but I do not enjoy going to the crowded malls and I am literally incapable of going alone, so anything else will be done online.

Its not that I don’t want to recognize Christmas – I do.  And I do want the kids to have a memorable one.  But my ideas of memorable Christmases no longer have anything to do with the hype, the food or the gifts.

Simple.  I long for simple.  Stress free.  Quiet. Together.

Gentle.

Calm.

Peaceful.

Hug your families.  Its more important.

Wendy xo

 

 

 

 

Nivolumab and music to my ears

Well, it’s finally coursing through my veins. Welcome Nivolumab. I’m not sure what to expect but we are hoping for the best. I’m supposed to receive a treatment every 2 weeks for the foreseeable future with the hopes that these tumours will start reversing their course of action. Lets all hope that happens sooner than later.

I have to admit, I’ve been feeling pretty decent the last couple of weeks. Since Radiation therapy. Apparently I’m a “responder” and radiation seems to work for me – albeit temporarily. So far, I can walk a little better and am getting some better sleeps thanks to some holistic medication.

I would just like to be in good enough shape to enjoy the holidays with my family. That’s my goal.

Otherwise, there isn’t much to report really. I would love to say a lot more but I’m kind of in a good place where I have some balanced sleeps, pain relief and feeling OK overall.

Since my hearing loss suffered as a result of the Cisplatin, I’ve been on the search for a good portable music player. For everyone who said “iPhone!” shame on you. They sound horrible. To be honest, they are good for most applications but for music, not so much. I’ll listen to Audiobooks and Podcasts on my iPhone but not so much music unless I’m streaming it in the truck.

I ended up buying a dedicated music player with a built-in headphone amp, DAC (Digital to Analog Converter), and 10 Band EQ. It uses micro SD cards for storage which cuts down on the cost. You would think that these are expensive but they are about ½ the price of an iPod and can be loaded with unlimited music. It decodes all recorded music formats including all lossless formats. All you need is a decent set of headphones and you are off to the races. So I sold a few guitar pedals, went to my favourite boutique music store (The Headphone Bar) and bought a FiiO X3 music player and a pair of Sennheiser Momentum II headphones. Not cheap overall but what a great sounding little system. With the 10 Band EQ I can adjust the player to cover off the frequencies I now have difficulty hearing. So far so good. Now it’s just a matter of loading a bunch of Micro SD cards with my favourite tunes.

Wendy had had me working the last few days. I think she mentioned it in her post. We’ve had to re-arrange the office to accommodate a hospital bed – just in case. I may try it out tonight. I’ve been sleeping in Rob’s chair in the family room for the past week or so. It’s so comfortable and I’m getting some great sleeps. I’m hoping I can transfer that to the hospital bed because the last thing I want to do is wear out my father-in-law’s chair. He was nice enough to lend it to me, I don’t want to wreck it.

Well I think it’s time for me to kick back and have another nap. That or make dinner. I can’t decide now. Lol.