When someone asks you “How are you?” I’ve discovered you can tell whether they’re simply looking for you to reply “okay” and move on, or if they’re looking for you to be honest, and to be able to listen to whatever your response may be.
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Six years of radiation, surgery, Stem Cell Transplantation, CAR T cell therapy, and dozens of treatments later, I am much better at identifying the difference between the two.
Cancer does not have a finish line. There isn’t one. Even on the best days – especially the best days – Cancer is there. Sometimes in front of you, and sometimes in the background; but it’s there nonetheless. Much like a long-term houseguest who has rearranged all of your furniture and you’re learning to get by without having to turn on the light switch (because the lights went off). You’ll occasionally forget and try to reach for the light switch, and you’ll occasionally walk with confidence through the darkened rooms. And you can say either one. You can say both.
Before becoming ill I was a maxillofacial trauma surgeon for 30 years. As such, I spent 30 years working with patients on the other side of the operating table. I was familiar with anatomy. I was aware of treatment options and treatment protocols. I could clearly explain the treatment options in a manner that would alleviate a patient’s fears. Then I found myself on the opposite side of the operating table. I found myself in a surgical gown with an opening in the back. I was finding out what “stable disease” really meant. I was finding out that medical knowledge doesn’t provide pain relief or improve sleep quality before a scan.
Becoming a patient provided me with the realization that knowledge and experience are two completely different worlds.
I have learned that gratitude and grief exist in the same room. I can be grateful for being alive today, for being able to enjoy this day, for this moment of feeling somewhat normal, and yet grieve for the future I thought I would have. A future with predictable aging, a body that works reliably, and a “next year” that is expected instead of a possibility I hold loosely. People expect these feelings to rotate and to be orderly. They aren’t. They are entangled together like roots, and attempting to separate them to study each individually does not respect how it truly feels to live with cancer.
Joyce, my wife, has been my main caregiver throughout this journey. I have learned that being a care giver is a grossly inadequate description of what she has done. I have learned that she has had to become educated in a whole new medical vocabulary that she never wanted to learn. She has had to track all of the appointments that we have gone to and organize all of the medications I have taken. She has had to hold onto hope for a cure when I lost mine. But I have also learned that she is not a saint or a hero. She is a person that lives with cancer too, but in a different way. She has the right to be angry and to be sad. She has the right to be exhausted. She has the right to want a life beyond these four walls. Cancer has taken my physical body hostage, but it has taken her ordinary life hostage too.
I have learned that resilience is not something you either have or you don’t. Resilience is something you continually work on. Resilience is getting up when you don’t want to. Resilience is crying in the shower so no one else sees it, and resilience is also allowing someone to see you cry in the shower when the water in the shower becomes too much and you can’t hide it anymore. Resilience is both of those things. Resilience is saying yes to dinner with friends when you are too tired to go, because isolation is another form of death. Resilience is also saying no, and not apologizing for it.
There are many questions that I have stopped asking because I know they cannot be answered. Why me? Why not me? What did I do to deserve this? What could I have done differently? These are trap doors disguised as doorway entrances. I have learned to identify them and sidestep them. However, I have not learned to stop wondering why they haunt me at 3 a.m. when I am unable to fall asleep and the darkness is heavy with doubt.
The uncertainty may be the most difficult aspect of living with cancer. The uncertainty of whether the results of the scan next month will show stable disease or growth. The uncertainty of whether I will be here to attend my grandkids’ graduation, wedding, or everyday Tuesday afternoon. The uncertainty of whether I am experiencing fatigue due to tiredness or if it is something that needs to be addressed. To live with cancer is to live in a state of constant maybe, and our minds were not made to sustain this level of uncertainty.
I have learned that people intend to be helpful when they tell me that I’m a brave or strong or inspiring individual. Here’s the truth, however. I didn’t choose this, therefore I’m not brave. I’m simply here, doing what the day demands because if I give up then the alternatives are to stay in bed and not interact with anyone I love. Some days that is simply a product of stubbornness or routine or the presence of loved ones. I’m not battling cancer. I’m living with it, sometimes making deals to accommodate it and sometimes just existing.
What I want everyone to understand the most is this: If you love someone who is living with cancer, you don’t have to fix anything or say the right thing or make things better. You can’t. But you can be present. You can sit in the mess with us. You can cease to attempt to find the silver lining, or the lesson, or the reason this will eventually make sense. You can allow it to be senseless and awful and also allow us to laugh at something absurd, or talk about something unrelated to cancer, or simply sit quietly with us.
And if you’re the person living with cancer and are reading this – you have the right to be angry. You have the right to be scared. You have the right to grieve. You have the right to celebrate, when you do celebrate. When you do celebrate it doesn’t mean you are over this or that everything is okay now. Cancer exists inside of you with multiple truths. You are entitled to all of it.
I’m still here. That alone can be sufficient on some days, and not sufficient on others. Today, it is sufficient, and I’m learning that that is where life actually takes place – in the uncertain, complicated, messy now – not in the before, nor in the after.
