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

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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.

Foo Fighters!

I just got back from the Foo Fighters concert in Vancouver. Wow, what a great show and I got to see Gary Clark Jr. who opened for them. I had tickets to see a Gary Clark Jr. show a couple of years ago but I missed it because of work so it was a bonus to learn that Gary Clark Jr. would be opening for the Foo Fighters starting with the Vancouver show.

I wasn’t sure I would be going to the concert because of the amount of pain I was in but things leveled off today and I managed to get it somewhat under control with meds. So I made it, albeit hobbling, and had to have Zak throw up blocks behind me so people wouldn’t bump into me. It worked out just fine and we had a few laughs over it.

Gary Clark Jr. was pretty awesome. He ripped on his guitar, which was drenched in familiar fuzz. He sounded awesome.

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There were a couple of let downs though. First off, we had shitty seats for this concert. They would have been great seats if everyone had remained seated. But no one sits at a Foo Fighters concert. So I had an idiot across from me (and in my way) who was probably the Foo Fighters #1 fan. He stood the whole time, blocking my view of the stage and jumped around like a fucking moron all night – as if he was talking directly to Dave Grohl (lead singer) and that Grohl could actually hear him. Imagine one of those annoying #1 fans from a movie or TV show and it was that guy! I was ready to beat him down with a stick but instead I stood for certain songs and tried to see through this idiot’s flailing arms for others.

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Overall it worked out just fine. I stood for my favourite songs and didn’t really miss too much. The band played a lot of my favourites. Almost all of them. I had one minor embarrassing moment – I actually burst into tears (heavy flow) during one of their songs. Luckily, due to our positioning, Zak didn’t see me and everyone else was watching the concert. The song was “Walk” from the Wasting Light album. There is a passage in the song that struck home pretty hard. I knew it was coming and could feel the tears and emotions spike as it drew near. Grohl sang the passage with as much force as he did on the album. It was great. For those of you who are familiar with it or have the song, it starts at around the 2:45 mark. Love that song.

They played for almost 3 hours straight and peppered their performance with renditions of some famous Canadian songs like “Summer of 69”, “Cinnamon Girl” as well as “Under Pressure” by Queen and a partial Van Halen song or two. It was a typical Foo Fighters concert (from what I’ve read) and Grohl pre-warned everyone that the Foo Fighters did not do encores. He said “we are not going to pretend to leave the stage and wait until you clap loud enough to bring us back. Fuck that. We will just keep playing until they tell us to leave. How’s that!!” To which everyone responded with a roar and they broke into another song.

Zak and I had a great time and I picked up yet another t-shirt!

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