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.

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

Tick Tock, Tick Tock …

Hard to believe another week has passed.  My body and mind are crying out for some stress relief.  I have not yet figured out what form it should come in.  I guess if I knew that, I would be able to relax.  Walking and hot baths seem to be the best way right now, and honestly there doesn’t really seem like much time for either of those anymore.

If I wasn’t a hypochondriac before all of this (and I probably was), I definitely am now.  Possibly not in the true definition, because everything I need to see a doctor about is actually a real thing and not just imagined (and I think hypochondriacs just make up their symptoms), but I strongly suspect that most of my aches and pains are brought on by stress.  I am starting to find myself at the doctor almost as much as Ben, and its troublesome.  I’m afraid I may be locked up soon.  While most of my issues are actually doctor worthy complaints, it is a fact that I can no longer even experience something as simple as a knee pain without going to a deep, dark place in my mind.  What if….

This week brought about a trip to the kidney / bladder specialist.  Not for Ben, not even for myself, but for Zak.  Between my history and now Ben’s, our kids have to start being checked at age 19.  Add a few more worries to my plate.  Nothing like adding the worry of waiting for test results for your children in addition to waiting for results for your True Love and also for yourself.

I guess on the upside, the one good thing about Zak having this appointment with Dr. A (who has also been my bladder doc for about 15 years and was originally Ben’s kidney doc) is the fact that I was able to get in to see him too while I was there with Zak, without having to get a referral.  Huge relief for me, because the last few weeks have been miserable for me and my bladder. Again … probably caused by stress, but a very real and extremely uncomfortable problem nonetheless.  He gave me meds and they seem to have worked.  Cross one worry off my list – now only about 3 or 4 waiting in the background.

Zak was pretty good natured about his appt with Dr. A.  I guess that comes with the blissful invincibility of youth.  I did chuckle when Dr. A asked me to leave the room for a minute because he wanted to examine Zak.  I believe Zak’s exact question was “Huh?”  And I responded “He needs to feel your junk.”  To which Zak replied, “Well thats awkward.”  Haha.

On the 22nd we finally got an appointment with the new oncologist (Dr. Y) who works outside of the BC Cancer Agency and is allowed to administer the Nivolumab to Ben.  When his assistant called to book the appointment (after I hounded Dr K via email several times to let him know that we had not yet heard anything) I asked her “Will Dr Y start the Nivolumab at this appointment?” and she said “No.”

What????!!!

She said that Dr. Y needed to meet with Ben and talk to him first.  Holy crap … I almost lost my mind.  How much talking must we do?  Ben is exhausted.  We have talked our faces off for the last 7.5 months.  We have discussed everything with Dr. K.  Ben has been without any treatment at all for over six weeks.  We have begged for and received the drug coverage.  Give him the drug already!!!!!  Nope.

We dutifully met with Dr. Y in Burnaby, and absolutely nothing new came out of the appointment except more wasted time, in my opinion.  The good news is that he agreed to administer the Nivolumab.  Actually, what he said was “I don’t disagree with Dr K’s opinion on starting Nivolumab.” Well yippity do dah day! Lets get on it then.  Time, it is a tickin’.

When does Ben start, you ask?  Who knows.  Once Dr. Y agreed to administer the drug, he sent us to the hospital pharmacist to begin the process of ordering the drug.  Thats right … it hadn’t been ordered yet. Even though we have coverage and he had all the emails confirming the coverage. I guess he didn’t want to have the drug pre-ordered until he knew he was going to actually agree to give it to Ben.  I’m not sure what reason he imagined may have caused him to say ‘no’.  But either way, it hadn’t been ordered and its not a drug that you can just pop out to the drug store and pick up.  He figured about five days.  FIVE DAYS.  Really?  Another FIVE days??  And that’s if all goes smoothly with the ordering of the drug and the direct billing etc.  Even then they will have to find time to book the appointment to actually administer the drug to Ben.  It is my plan to call Dr Y’s assistant tomorrow to check how they made out.  I will get that drug if I have to drive back east myself to pick it up.

Our next stop was an early morning appointment to see Dr. H at the pain clinic in Vancouver.  We had a long discussion about Ben having a procedure called a cordotomy.

“Cordotomy (or chordotomy) is a surgical procedure that disables selected pain-conducting tracts in the spinal cord, in order to achieve loss of pain and temperature perception. This procedure is commonly performed on patients experiencing severe pain due to cancer or other diseases.”

It has taken Ben quite awhile to wrap his head around this idea.  It is a permanent procedure.  There is no going back once that nerve is severed, and severing of the nerve means a permanent loss of any ability to feel temperature or pain. But the pain, for Ben, no longer serves a purpose. We already know that something is wrong, and we know what it is.  He doesn’t need his body to constantly experience pain in order to alert him that something is wrong. I think he understands that now.  I very much would like him to no longer be in pain, and I believe that constant pain prevents true healing.  It scares him to think about not being able to feel temperature, and I totally understand that, but unfortunately there is no way around it.  Dr. H assures us that a cordotomy does not affect sensation of the skin when it comes to feeling touch.

There is only one neurosurgeon in BC who performs cordotomies.  He has a two year waitlist, but Dr H says that he pushes everything back for cancer patients.  Lets hope so.  We are now also waiting for that call. Apparently the neurosurgeon is a skier who likes to go away for Christmas, so it is Dr H’s hope that he will fit Ben in for the procedure before the holidays.  Merry Christmas to us.

On Friday the Home Care nurse arrived at our house for a consultation with Ben.  Poor Ben was so exhausted he kept falling asleep while she talked.  You know Ben is really tired when the nurse is about 25 years old and super cute, and yet he still falls asleep! Lol.

I found the visit with the nurse difficult.  When she asked how she could help, Ben asked her for a hospital bed to be installed in the house, and for a walker.  Sigh.  Thats a hard pill to swallow.  Ben thinks that a walker will help him get outside to try to walk around the block, and of course exercise is so important and necessary.  I do think it would be very helpful for Ben to be able to exercise even a little.  As of today he has lost over 50 pounds since May, and sometimes he feels so weak that he cannot walk up the stairs.  So he really needs to try to exercise and build up some muscle, and if that means using a walker for awhile then so be it.  I LONG to be able to walk around the block with him.  We used to go for long walks together, and I miss that very, very much.

We spent the majority of the weekend cleaning out our home office on the main floor so that the hospital bed can go in there.  That way, if Ben is unable to make it upstairs he has a comfortable place to sleep.

Cleaning out the office was no small task.  For those of you who know us well, you know that the state of the office has long been a bone of contention between us, because Ben is a HOARDER and a total slob. It is total chaos in there. (Sorry honey, but our readership deserves the truth. lol) We used to share the office, but I was run out because it gives me panic attacks just to set foot in there.  I had to hang something over the glass door just so that I can’t see the mess.  In fact, it was so disgusting in there, that when I cleaned everything off of the bookshelf so that I could pull the bookshelf out, I actually found crumpled up garbage on the top of the 7′ shelf.  Which means that Ben actually had to crumple up the garbage, and instead of putting it into the garbage can right beside him, he had to have purposefully thrown it up on top of the shelf.  Seriously?  So that gives you some idea of what a big job this was.  The room was like the aftermath of Hurricane Katrina.

Ben was stressed out at my attempts to clean up the office to make space (hoarders get stressed when someone tries to clean up) so I compromised by running out and buying a tall, narrow set of drawers so that his papers (aka: junk) can be shoved into the drawers and out of sight, and yet not thrown in the garbage.  The problem is that the set of drawers I found comes in a box with a set of instructions to build them, and neither of us (for different reasons) were able to put it together.

It was Kirby to the rescue tonight.  He even brought his own tools.  He even read the instructions.  And re-read them, and re-read them, and so on…. it took him about 45 minutes to understand Step 2, but who am I to judge?  Haha.  Just kidding Kirby – we are most grateful and appreciative.

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Kirby working hard to figure this out

We did manage a bit of fun this week.  If you click on the pictures you can read the captions:

And if you recall, Ben was unable to make it to his Troop reunion in Ottawa on Friday night, so his troop mates came to him in the form of Face Time. It was extremely emotional for Ben, but so heart warming to see them pass around the phone and send love to Ben. 12-12-24!!

Hard to believe it has been almost a quarter century since these pics were taken!  That is Ben in the front of the first picture, sitting on the ground with his troop mates holding him up.  In the second picture he is in the very back – white shirt with a black hat in between the two in blue shirts.

Thats it for this week.  Hopefully my next post will be about how Ben received the Nivolumab and felt the beneficial effects really quickly!  In the meantime, I will leave you with this other little piece of normal life:

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Look closely and you will see that both these beauties are now four-eyed geeks like their mother was for 20 years before laser eye surgery.

Wendy xoxox

Volleyball and Nivolumab

I have been lax in keeping everyone informed with what is going on.  Hopefully everyone understands that our every moment is consumed with finding a cure for Ben and trying to keep some semblance of a normal life for our kids.  I feel I am miserably failing at that second one.

Ben was able to complete the radiation for pain in the area where the cancer moved into the muscle. Once the first five sessions were done the pain (in that area) settled down and it has been better since then.

Ben was released from hospital on Tuesday and we were particularly excited because he was almost pain free.  Everywhere. Seriously.  It was a truly glorious moment and we were literally able to almost forget that this disease has invaded our lives. Almost.

By the time we got home, the pain was starting to creep it’s way back into our lives.  Right down Bens leg and back into his foot.  The only upside is that it skips the area that was radiated, but the damn pain is still there.  And it’s bad.  So much so that Ben was not able to make it to Rae’s volleyball game that evening.  The first in a series of games in the Fraser Valleys which lead to the Provincials.

If he had been able to come, he would have been greeted by this:

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                                                                             Jr girls volleyball

See how they have headbands on?  Well, if you look a little closer you see this:

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                                                                                    Win For Ben

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                                                                                 Strength – Hope

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                                                                           Fight for Ben

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And on, and on.  Rae’s said “Pray For Ben.”  It was one of the most moving things I have seen.  I was so touched.  Raegan was so touched.  And Ben, well I’m pretty sure that this simple act by a bunch of teenaged girls made his whole week.  Seeing the support that Raegan is receiving brings so much relief to us.  It was a really nice moment.

Oh – and they won!

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On Thursday we met with Dr K.  I wasn’t much in the mood for pictures that day.  Barb met us there and we discussed Nivolumab again, as the coverage still had not come through at that time.  In fact, right before we went into that appointment, the RCMP physician sent Dr K another email to ask him if he had applied for coverage through the Compassionate Program of the BCCA, and if not, why not.

Dr K maintained his sense of humour, even at that early hour, and replied, “because it will be turned down which is as certain as an “Amen” in the church.”  Haha. The RCMP Doctor replied that she would pass that on to NHQ. 😄

In any case, we were no further ahead by the time we met with Dr K, so I told him we wanted to pay cash for the drug so that Ben could get started, and could he hurry that along for us?  Turns out that Dr K knew who to go to in order to find the drug, but he is not allowed to administer an off label drug at the BCCA.  Politics.  So Ben has to move on to a different oncologist who works outside of the cancer agency.  I’m a bit disappointed, but so be it.  Whatever it takes to get the drug. We left the appt with Dr K advising he would see if a Burnaby oncologist would take Ben on and give him the drug.

Later in the afternoon while I was running my groceries through the till at Save On, my phone rang and I was greeted by the RCMP Doctor.  She was phoning me to tell me that coverage for the drug had been approved for four months!

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I went home to tell Ben in person.  We had a moment, let me tell you. There is nothing like finding out you get another chance at life that brings out the feelies. 

So the referral has been made and our fingers are crossed that Ben will get a call to start it this week.  The Burnaby oncologist has agreed to take him as a patient – we just need to know when he can start.  The drug will be administered like chemo. I pray this is the answer.

In addition to this good news, my ever persistent sister found some really good info about another possible option involving gut health that could be helpful for Ben.  She emailed a doctor in the States, and lo and behold she received an answer today with some great information.  I can’t imagine how we would possibly walk this path without Barb.  So grateful.  You are the best, Barb.

That evening Ben was able to make it to Rae’s next two volleyball games, and guess what?  The girls all wore their inspiring gear for Ben again!  Another sweet moment.  So glad he got to see it.

Also, Ben and Zak made it to another concert on Friday night, and I’m told they had a great time (even though Ben has been paying for it in pain ever since!). Friday was a very rough night for Ben, and it hasn’t gotten a whole lot better since.

Lisa came over again this weekend, thank Heavens.  She talked me off my roof top more then once.  Thank God for her.  Also, we were able to do this:

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                                                                             Connie, Kirby, Ben

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                                                                                  Ben and Lisa

We do love our Thai food!

When we got home that night, I was greeted by the best Facebook post ever.  The lovely Christine and Cherri recently trotted off to Maui for some sun and a 10k race.  Check this out:

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 The front of their shirts says “Saint-Onge Strong”.  The back says “Will run for Nivolumab”. Check out these pics:

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Note the heart with our initials, the guitar, the stetson, the kids initials and the word “Titan” on the wrist above.

After I saw these, I felt like this:

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 Way to go, Christine and Cherri!  And thank you!  You said you would run for Nivolumab, and we got it!

To everyone who, over the last eight months has spent time praying for the answer to cure Ben’s illness, or sending positive vibes, or looking up info in the news or on the science websites …. We thank you.  We owe a big debt of gratitude that we could never repay.  

Kirby – for all you tried to do for us this week also, I hope you know how much that means to us.  It was our lucky day when we moved to 63B.

In a week that has been filled with the horror of terrorism all over the world, I continue to be moved by how good most people are.

Thank you.

Hug your families

Wendy xo

What to write?

What to write???

I have to try to catch up with my prolific wife. She seems to have a lot to say and the time to write it down. That’s not a fair statement, I have a lot to say and more time than her to write it down, I just forget to do it or see something shiny and get distracted. Duh.

A lot has happened over the last little while. So much so that I could not possibly put it in chronological order for a nice read. So I will point out some highlights!

Well, I underwent another bout of radiation treatment to help with the pain in my leg. Thankfully it did in fact address that particular pain but now there seems to be more pain in different locations. All the same leg, just top and bottom now. I shouldn’t say “more pain” because I don’t think there is more. It’s just the link between the two pains has been severed and now instead of my whole leg being sore with an emphasis on one spot, the middle is taken care of thanks to the radiation but the top and bottom still hurt. It’s hard to describe. I won’t lie though, I’ve been having difficulties dealing with the remaining pain. It hurts. Quite a bit. It keeps me up at night and consequently keeps my lovely spouse up as well as I lament and ask for her help in wrapping myself up in heating blankets or take a bath or search for breakthrough meds. I don’t know what I would do without her.

How about a happy highlight! One of the recent highlights for me is that I finally got to see Matthew Good in concert. He’s been an elusive artist and I thought he had hung up his touring gloves but in the end, he still performs live. I ended up going to the show with Zach. Wendy was my official date but she just wasn’t up to it for her own reasons. She has been working really hard on my behalf while I sit on the sidelines just taking my meds as expected and watching the show of life go on without me. So it’s totally understandable.

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Matthew Good was great. He played many of my favourite oldies from his time with the Matthew Good Band as well as some of his newer stuff in support of his most recent solo release “Chaotic Neutral”. I had a really good time. Zach didn’t recognize any of the music – it was before his time – but like his dad, seems to enjoy live performances no matter who is playing. Plus it was nice to spend some time with him.

Chaotic Neutral

Back to some sad stuff. The event did manage to solidify something that I had been struggling with over the past few weeks. Every year, my RCMP Troop has a get-together around the holidays. Just an informal get-together where drinks and laughs can be had. Over the years, I had passed on the opportunities for a number of reasons, mostly money since the reunions normally happen in Quebec or Ontario. I almost went the last two or three years but again passed, thinking “I’ll do it next year for sure”. Well next year is here and now it’s not about money, it’s my body that says NO! There is no way I could make it unassisted through an airport, trying to get to a connecting flight or reach a taxi stand for that matter. I just couldn’t do it. The pain is just too much. I was going to go to the reunion in Montreal and then visit my good friend Chris in Ottawa who finds himself in the same predicament I am in. He was recently diagnosed with cancer and is currently undergoing treatment. I don’t have the words to describe how heartbroken I am over my inability to go and support Chris. I so wanted to have dinner with my Troop mates and then visit Chris in person. But, I’ve realized that it can’t happen. My body just won’t make it. And that’s saying a lot because I’m pretty stubborn. If there was anyway for me to tough it out, I would. But there isn’t. My body failing me just makes me want to cry. Now, I hope there is a “next year” to do it in. I hope so.

Let that be a lesson to everyone, don’t put off what you can do right now because you never know… You may not be able to do it later.

Hi Ho, Hi Ho, Back To Hospital We Go

I am writing this from the ER of Surrey Memorial.  Just as Ben finally started to get some pain relief from the radiation (for the pain in his groin), a new pain slowly crept up in his rib / liver area.  It started on Tuesday, and by Friday when Jeff flew home it became intolerable, accompanied by shortness of breath.

(Since I speak of Jeff flying home, I will take this moment to confess to being so consumed with all things Ben that I accidently drove Jeff to the Tswassen ferry terminal instead of the airport.  That’s right …. I was driving along when Jeff inquired if I was certain that I was going the right way.  “Of COURSE I’m going the right way” I replied indignantly.  “They changed the roads to the ferry since you were last here.”  “But I’m not going to the ferry” was Jeff’s answer.  Duh.  And there began a mad trek to find my way back to the airport on time for his flight.  We made it.  Sorry Jeff.)

In any case, by Friday afternoon Ben was being felled by pain in his liver area and was having difficulty breathing.  I spoke with Dr H (pain and symptom management) and she encouraged me to bring him to the hospital so they could figure it out. She was incredibly helpful … phoning ahead to make sure they took him right away, and then providing me with her personal cell phone so that I could keep her updated.

Long story short, they did a ct scan and somehow messed it up.  They were looking for a blood clot which was unlikely since he is taking blood thinners, but you never know.    The image did not turn out well but they didn’t believe there was a clot.

Dr H told me that Ben should be admitted to hospital until the source of the pain was determined, and she spoke directly with the ER doc and told him the same.  He intended on admitting Ben, but Ben so badly did not want to stay in hospital that I told them I could manage at home and asked them to release him.  So they did.  Unbeknownst to me, Dr H told the ER Doc to expect Ben back this weekend, and she was right.


                                              Connie visiting with Ben on Friday

Fast forward to Saturday night.  The pain literally brought Ben to his knees last night. So I called Dr H this morn and she told me to bring him back to hospital and have him admitted.  Ben agreed, which tells you how much pain he is in.

As I write this he is being admitted. He has been sufficiently drugged and is sleeping semi peacefully in the ER.  The ER doc checked his CT from Friday and let us know that there are metastasis in the liver and lungs along with fluid in the lungs.  They assume that is causing the pain, but I believe another CT is being ordered.  Hopefully they will do it correctly this time.

It is doubtful that Ben will be able to complete his radiation, because the pain causes him to feel like he is being stabbed and it causes him to move suddenly, which cannot happen in the CT or they will radiate the wrong spot.

I have emailed Dr K to ask him to please try to access the Nivolumab right away, despite not having coverage.  Ben needs that drug.  I don’t understand who has to prescribe it, but Barb has just told me that Dr K said he cannot.  I don’t know why.  I guess I will have to follow up on that tomorrow.  But the bottom line is that we need that drug.  Now.  It is unreasonable at this point to think that Ben could fly to Toronto, so Nivolumab it will be and I don’t care what needs to be done to get it.

Jaime and Papa


Raegan and Papa

  

Zak and Papa



Fuck you, cancer