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.
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