Reality

January 10, 2017

At some point on a journey with terminal cancer you need to become realistic about what is actually happening, despite what you want. This happened to Ben and I yesterday. We arrived at the cancer centre for Ben's 33rd chemotherapy infusion, as well as 3 appointments that had been scheduled with his oncologist, his pain and symptom physician and the social worker we have been seeing occasionally. We knew today was going to be a long day, but we went in with positive attitudes and clear minds.

33rd chemo treatment. Friends next to our side.

We sat down with Ben's pain and symptom management physician first. I've mentioned this before but we love this doctor. She goes beyond the call of a physician, taking her time with you and really wanting to make sure you are okay and understand what is happening. Her main question for Ben today was how he has been feeling, like, really feeling. As mentioned in my last post, Ben has been spending an increased amount of time in bed. His exhaustion has increased and he has been experiencing discomfort and a pain like feeling in his abdomen and area surrounding his liver. With all of this information Ben's doctor looked at him and asked him some pretty real questions. Her biggest concern was Ben's quality of life. She told Ben she sees him sacrificing quality of life for time. That was hard to hear, and yet I've been seeing this happen with my own eyes. Ben has minimal quality of life. He may be able to get up and spend half a day out of bed, but then spends days if not weeks in bed afterwards. She really encouraged Ben to think about what it would look like to come off chemo and live the rest of his life to his fullest, with quality time, feeling more alert and awake, spending time with the girls and I, but knowing that he would be off the chemo and time would be precious. This thought scared Ben. I could tell. Tears came pouring down his face. Watching Ben completely broke my heart. He shared some personal struggles with the physician about how he feels about stopping the chemo at this point.  She wanted to pursue a CT scan sooner than planned to get his abdomen and liver looked at due to the discomfort. We continued on with the conversation and left the conversation open knowing we were meeting with his oncologist next.

We sat down with his oncologist and to our surprise the conversation was actually very much the same. She too saw Ben sacrificing his quality of life, pushing his body through chemo, somehow enduring the terrible side effects of 33 chemo infusions. She questioned Ben's wants and needs just the same. At one point I finally looked at her and asked what she thought, honestly, and what she thinks we should do. Her personal opinion was that instead of waiting the 4-6 weeks for a CT scan that was originally planned, we do a CT scan now and rule this chemo in or out and deal with the next steps now. I could tell Ben wasn't ready for this. I watched him try and process this information in his mind but could tell he just couldn't and didn't want to accept this next part. Ben has opted to continue on with the next few chemotherapy treatments, do a CT scan in the next 4-6 weeks and then deal with what is next after the results of the CT scan come. We are basically looking at 3 things.
1. The CT scan shows improvement so he stays on the current treatment (which we have been told is not likely- but huge miracles can happen?)
2. The CT scan shows no improvement and Ben stops chemo altogether. His pain will be managed by his doctor and he can expect his quality of life to improve being off chemo, giving him 2-3 months.
3. The CT scan shows no improvement and we head to Toronto for a clinical trial. This clinical trial is a phase 1 trial- meaning it has not yet been tested on humans, meaning symptoms and side effects are unknown. This would also mean we would need to travel back and forth to Toronto and Ben could have to stay over night as he is monitored.

This is the end stages of decision making with cancer. It brings you to a place mentally that is extremely challenging. I sat down last night trying to type up this post and just couldn't put the energy into it. I was too tired to even think. I watched Ben glare into space, he appeared far from me in his thinking and trying to process all of this. No one wants to hear that the only thing that will save you from dying is not working. I can't even imagine hearing that. And yet my husband sits here being handed this. I crawled into bed last night and for the first time in a long time I prayed, asking God to hold us through this and bring Ben comfort and peace during this time. I felt helpless. Completely hopeless. This is the moment I have been trying to mentally plan for since Ben was diagnosed, and yet still hoped and prayed it wouldn't actually happen.

Over the past 18 months God has shown himself to me in such raw, real ways. You think you have everything under control. I'm a planner, a type A individual and so I always thought I had everything just right, and if I didn't, I worked really hard to figure it out to control the situation. God continues to show me that he is in control, and that I am not. That he has this mysterious plan for me. Do you know how hard that has been for me to accept? I still don't understand why it involves my heart breaking and my family being torn apart in the process. Somehow I am still sitting here with this visual of me and God, my head on His shoulder, leaning on Him for comfort and guidance, Him hugging me and reminding me that He has everything in order for me. I won't say that, that visual makes this easier to watch your husband go through this, but it does give me a sense of peace and comfort. I can only pray and hope that Ben feels this same way going through this. I pray that God comforts Ben right now in ways that you and I can't. Please pray the same for Ben.

As things continue on I will do my best to share an update with everyone. I am still amazed at the people who come up to Ben or I and say "I've read your blog... how can I help you". You have taught us so much by loving us through this. We thank God for you. Know that I am saying a prayer for all of you as you witness our family go through all of this, how hard that would be for you too. Ben has certainly touched a lot of people and I thank God for him. We love you Ben!