After surgery, I was given 2 treatment options.
Option 1 would allow me to live longer without recurrence of my cancer. The cancer would recur, but it would be kept at bay for maybe 2-3 years longer than option 2. However, option 1 would leave me with side effects that would develop over time. The side effects would likely mean that in my 40s I would have trouble working, have memory problems, trouble completing a to-do list– cognitive problems would be expected, although the extent of these side effects are hard to predict– there is a range to how much people are affected.
Option 2 would keep the cancer at bay for a shorter amount of time– likely a few years, but not as long as option 1. Although I would have earlier recurrence, I would not have the cognitive side effects develop from option 1, which themselves would likely decrease my quality of life.
Either way, my overall survival is expected to be the same– one option would not lead to a significantly longer life than the other.
Either way, I just hope to remain a surgical patient– so that when the tumor comes back, I can have it removed again. When the tumor is inoperable, then that’s just that.
So my family and I sat with this decision. We tried to figure out the “right” answer, but it was easy to see there was no right answer to this impossible riddle. Each choice was terrible in its own way.
Was more time between the ordeals of cancer resurgence and repeat surgery the most important thing? As a doctor I have counseled families about the importance of quality of time over quantity— doing everything to delay an inevitability isn’t always the best thing. But, it is much different thinking about this in my own life — when I think of how many birthdays I want to celebrate with my children there is no number that is enough. Quantity is also important. If I had more time, would it be worth it if my mind couldn’t keep up? Would I be able to enjoy it? Who would I become in that scenario? If I was no longer able to be self-sufficient maybe I wouldn’t be myself at all. But then… whose to say I would recover from my next surgery as well as I have now? What if the first time the tumor comes back it is inoperable? There were so many scary “what-if’s” that flew repeatedly through my mind as I tried to make the decision.
But– my husband pointed out– there are also so many hopeful what-if’s to consider, too: What if my tumor doesn’t come back at all, or is much slower to come back than statistics predict? What if in the next few years we find out new treatments, even a cure for oligodendroglioma?
These two sets of what-ifs felt like a fork in the road– both were equally centered in reality and imagination.
I realized that option 2 allowed me to have more hope. It gave me the ability to believe that the future may not be as bleak as in option 1. If I chose option 1, it felt like I was admitting defeat– but option 2 felt like I have the ability to perhaps gain the upper hand despite the risks that come with it. In the next few years maybe there will be an even better option #3,4 or 5? This is my hope– but hope is not enough. It is my goal— which I have written about before here.
There are moments where the scarier scenarios are all I can think about. Thankfully this happens less often than it used to– but it still happens. What is helpful to me in those moments is to embrace the fact that there is no way to know– for anyone– what the future holds. Being crippled by fear of things that we cannot control helps nothing. Instead, I’m choosing to aim high and far, but not get lost in the clouds. I am focusing on what I can do with my hands, with my life, to try– someday– to be able to have a better answer for people who are given similar mind-numbing choices to make.