The Journey of Cancer: Lessons Learned

As the sister of somebody who is going through a very long and complex battle with cancer, I have learned a lot. Yet, no matter how much I learn, there are so many things that I am never going to understand. To start, how is she feeling? I’m not the one with this awful illness. No matter how many days I care for her or how many nights I spend next to her, I am not the one who is living with cancer inside my body.

I have often surmised that dealing with this disease is the equivalent of the world spinning so quickly that gravity does not allow you to steady yourself. I have heard many descriptions of a world spiraling out of control or being flipped upside down. Although I may never know how she is feeling, I have been by her side more often than not these last 18 months. Here are some simple observations of the emotional rollercoaster that is cancer.

Just imagine for a moment, being a twenty-something who has zero control of their life -- not a choice in where to be, what to do, what to eat and who can see you, not even the ability to go outside when you need to smell fresh air. For people like my sister, that is a constant reality. They don’t have to imagine it, because it is their reality.

They could, in fact, choose to disobey. They could make the choices that they wanted and not listen, but they would face consequences that nobody should. There are two sides to every coin. On the tails side, death. Or they can have heads-- side effects to medication, being told what to do all the time and a chance. For most, including my sister, there simply is no contest. Any chance at all is better than no chance at all.

As my sister has had varying diagnosis and we have been faced with many dead ends, her emotions have never been in the same place. I should note that prior to falling ill, she was always an emotional pendulum.

The feeling of loss is not an emotion that I have seen her deal with directly. Loss to her is different than I think it might be to most. For her, loss is not about losing what she has already had. No, for her, loss is about what she will be losing out on, like the memories that have yet to be made as being an aunt or watching me to graduate nursing school. In so many ways, it isn’t her memories that are the biggest enemy, but the future that may be slipping away before she can live it.

When we get up for the day, we do not generally think about tomorrow. We think about the day set before us. For somebody who is terminally or chronically ill, that is not always the case. They think about the chance that today is there last. While we may crave adventure and spontaneity, my sister just wants things to be quiet. A simple routine, that is never changing. It would be a nice respite from the constant change that has ruled her world for this last year and a half.

One day, she may be in tears and throwing up, unable to open her eyes from the sensitivity to light. The next day, she will be okay and the medications that we have her on will manage her pain. On the good days, you can tell that an underlying anxiety clouds the joy. That expectation that it won’t last ruins her ability to enjoy how wonderful a good day could be.

I have been told that no matter how she lives her life, or what she does, to some extent the disease will progress. It is the nature of an illness such as Stage 4 cancer. It can be difficult to prevent the effects that this can have on ones psyche. To live with the element of the known is taxing, but when we have no maps to the illness it becomes an unknown element that haunts the afflicted.

It is difficult to help in a situation where so much pain is internalized. Not always by choice, but by her inability to share and express what it is that is wrong at any given moment in time. The effects that this illness has had on her are immeasurable. What I have found is that expressing my emotions aids in the sharing of hers. Venting my own anger, frustration and worries creates an open forum where she is able to talk, hopefully helping to create a balance that allows both of us to catch up and find our footing, even when the world is spinning out of control.