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:
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:
Zak is shocked at the early hour!
Rae Rae and Papa
Jaime and Daddy
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.)
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.
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.
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.
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