Expecting to live is more pleasant than expecting to die.
Susan F was unwillingly thrust into the world of metastatic breast cancer after a routine mammogram in 2012. She uses her powers of persuasion, knowledge and writing for good in hopes of helping others similarly affected. She is a patient advocate, volunteering with METAvivor (metavivor.org), a volunteer organization raising funds for research in metastatic breast cancer.
I'm going to knock on wood before I post this (really). That's what I do. I knock on wood. I comment that I don't believe in God, but I do believe in knocking on wood. By that, I mean that I do not believe God does stuff to us, gives us cancer or takes it away. I wasn't given this. I got this. But for some reason, knocking on wood just makes me feel better.
I do want to talk about the concept of 'if, not when.' So I'm going to knock on some wood before I type this to keep the evil eye of cancer away. Wouldn't it suck for me to say that I'm doing well, and then the cancer came back? Knocking on wood here.
So back to 'if, not when.' When I visit my oncologist, her patter includes the concept of "when the treatment stops working." Now I understand that her experience has been that her metastatic breast cancer patients' disease eventually learns the treatment and the cancer progresses. But it wasn't until recently that I realized how her constant talk of 'when' was affecting me. It was bumming me out.
'The Land of When' has me thinking ahead to the day when the cancer will progress — how that will result in my disability, my job loss, my eventual pain-filled death. In the 'Land of When,' I am afraid to make plans, I wake up in the middle of the night in a panic, and I watch and wait in fear. I am tired of living in the 'Land of When.'
Sadly, I don't think doctors realize how much what they say affects a patient. People can live and die on a doctor's word, demeanor, approach. My oncologist certainly does not mean to harm. Instead, I think she is trying to help. I often joke that she is like the parent who doesn't want her child to be disappointed. "Honey," I could hear her saying, "I know you really like that boy. But he might not like you, so don't get your hopes up."
But my question is: What is wrong with getting my hopes up? What is wrong with expecting the unexpected? What if I'm that very rare patient whose cancer doesn't progress or stops progressing? What if, 10 years from now, I am still taking Kadcyla and the cancer has remained in check (knock on wood)? And what if I live those 10 years in constant fear and panic?
That would suck.
I don't want live in the 'Land of When.' That's like living in purgatory, and I hear from the Catholics that that's not a pleasant place. I want to live in the 'Land of If' instead. A land where wonder if the cancer progresses ... if I am disabled ... if.
That's the land that most people live in. Most people don't go through the day thinking: I will be disabled, I will be in pain, I will suffer.
What can it hurt for me to live in the 'Land of If' too? I might be disappointed if the cancer progresses. I'd rather experience disappointment if the cancer progresses, than experience the disappointing expectation of death every day of my life. Even if I only live 30 more days, living in the 'Land of If' sounds much more pleasant than living in fear.
So screw the 'Land of When.' Screw the 'Land of Fear.' Screw the 'Land of Pain.' I refuse to live there anymore. I'm moving to the 'Land of If.' Packing the truck and knocking on wood right now. If. If. If. If.
Now to tell my overprotective oncologist.