This will not be my most thoughtful or amusing post. Quite frankly, I’m not in the mood to write and I am not feeling particularly inspired. I can barely tolerate watching Ben next to me in so much pain, so I plan on occupying myself (when I am finished writing) by preparing Ben’s post chemo meal for tonight. It is a trick to get just the right food in him after chemo before the nausea and vomiting begin.
As Ben mentioned in a previous post, he had the cementoplasty on Sept 9th. His post was funny and made everyone laugh, but the pain he was in at the time was not funny at all. A solid 10 out of 10 for pain by the time they were preparing the room for the surgery that morning. The nurse did administer a narcotic directly into the IV for pain, and it worked for approximately 9 minutes. Not joking. In less then 10 minutes he was at a 7 out of 10 for pain again.
The day was horrifying, because the two hour procedure turned into hours and hours with zero communication. As usual, Barb came down to the hospital to sit with me but was eventually required back at her office and we still didn’t have any information beyond the fact that we were reasonably certain he was alive. Always good to know.
I finally pushed hard for answers in the evening and was allowed down into the recovery area. I guess they kept Ben there (where family is not allowed) because every time they took him off of the oxygen his numbers dropped. Also, Dr Radu wanted him kept overnight and so there was that whole disagreement between VGH and the Cancer Agency. At the end of the day, as you know, Ben came home.
Within 15 hours of the procedure, Ben was back at a 7 out of 10 for pain, and it hasn’t really eased much since. As I type this, he is suffering.
I have spoken twice with Dr Radu. He is working hard at getting Ben back in for a more selective nerve block. The poor guy (Dr Radu) is clearly run off his feet and I have a very strong feeling that he will be doing Ben’s nerve block on his own time. They are booked solid. He is doing everything he can to have this nerve block done before we leave on the 23rd. I emailed him my appreciation. If I was his mother (Dr Radu’s mother) I would tell him “You can’t save the world and you need your rest too.” As Ben’s wife I say “Thank you from the bottom of my heart for giving up your own personal life for the care of others.”
Yesterday Ben had a biopsy on his liver. First step in the POG trial. The procedure was not fun for Ben and has added to his pain. I am praying that they now may find the answers they need to help Ben. While he was recovering from that I hounded the poor receptionist to put notes on Ben’s file to push for a more urgent CT scan. Ben was supposed to have a CT scan between round two and round three of chemo, so a determination could be made regarding whether or not this poison is holding off the disease. Unfortunately, summer holidays and the number of people lugging this disease around in their bodies prevented that from happening. The lovely receptionist has asked, at my request, that Ben be squeezed in for a CT before we leave for LA, so that the results are there when we get back. We’ll see. We probably won’t find out the results anyway until we meet again with Dr K, which won’t be until next month. So in hindsight, its probably not all that urgent.
In the meantime, today is round 3 of chemo. Well, more like round 2.5 because he is only having one dose instead of two. Two doses would have made it impossible to go to LA. So one dose it is this time. One dose is bad enough. We plan on attacking it with every anti nausea med we have. Ben has agreed to try to keep it at bay so it doesn’t overtake him.
Despite the pain, we did manage to attend a most delicious meal at Mom and Dad’s. A send off of sorts for Zak who was heading out of town to work for two weeks. You will note there were a couple of boyfriends along for the ride..
I kind of caught everyone off guard here – especially the two cranky looking ones on the left.
One last thought that I did want to write on here so everyone is aware. Flu season is around the corner. By mid October I really don’t want to have anyone in the house if they haven’t had their flu shot. Thanks in advance for your consideration. If you don’t want to be immunized, no problem. Just be upfront and honest – I will meet you elsewhere for coffee etc.
And on that note I must go buy some chicken before heading back downtown for chemo. #prayersforben
On the day I called, you answered me; my strength of soul you increased. Psalm 138:3
POST SCRIPT: After I signed off on this post, the Pain and Symptom Management nurse called me. After explaining how much pain Ben is in, she asked us to come down to the Cancer Agency immediately before chemo. So here we are right now, waiting for the doctor. Hopefully they can figure something out before chemo.
Also…I was unsuccessful in my quest to pick up chicken. In fact, when I got to the local grocery store and discovered that the chicken I wanted wasn’t there, I promptly burst into tears. Doesn’t everyone cry over a lack of chicken? Thanks for the hug, Linda. You should have seen the look on your face when I started crying. If I hadn’t been so upset I would have laughed.
POST POST SCRIPT: We received the call. Second try at nerve block happening TOMORROW! God bless Dr. Radu.