Tuesday, June 13, 2017

If No One Fights Alone, Why Do I Feel So Lonely?

I've wanted to make this blog entry for some time. It's been a working title for weeks. I've been searching for the correct wording and message to convey my feelings without making it sound like a pity party or a guilt trip.

Then this week someone did it for me. I read Linnea Olson's latest blog and it said just about everything I've wanted to say and more.

It’s a jungle out here

Pretend for a moment that one hundred people are standing in front of you. The only thing you know about them is that they all have lung cancer. One at a time, each person approaches you and then shares some intimate detail about their lives. Sometimes you sense that you have much in common with the speaker, sometimes little. In each case you get an overwhelming sense of their humanity.
You are thinking about how you would like to get to know some of them better when I drop a bombshell: only eighteen of these people will be alive in five years.
It shocks you but I assure you I have not told you this merely for dramatic effect; statistically speaking, this is an actual scenario. The five year overall survival statistics for all stages of lung cancer cancer are only 18%. At stage IV, that number drops to 2%, or just two individuals out of one hundred.
Statistics only tell part of the story because numbers are not nearly as compelling as living, breathing human beings.
Now imagine what it’s like to be one of those hundred; that you too have been diagnosed with lung cancer; that you too will fall somewhere along this statistical curve.
It is a terrifying feeling, and isolating as well–as many of us feel that friends and family can’t really comprehend the sometimes debilitating anxiety that is part and parcel of our diagnosis.
We often combat that feeling of isolation by connecting with others people living with lung cancer–through support groups, social media, summits, or advocacy work. However, this network can become a double edged sword, as we are now invested in each other’s outcomes. When one of us passes away, a collective shiver runs through the entire community. We grieve, we rage, but we also rightly wonder if we might be next.
Over time, it becomes a trauma–this mix of fear and sadness. And for those whose cancer is considered incurable–and in the case of lung cancer, that would be most of us–there is no post to our traumatic stress. It is ongoing, or OTSD.
We focus on staying alive even as we worry–constantly–about dying. And, because we often don’t look as if we are ill, it is very, very difficult for those around us to fathom what it’s like to live on borrowed time.
Can you plan a vacation six months from now? Is it worth spending the money to get your dental work done? Will you be there when your kids graduate from high school?
As a society there is a great deal of emphasis on planning for the future. When you are living with cancer, it often feels as if the future has nothing to do with you.
I’ve now been living with the idea of dying for over twelve years–more than 20% of my time on earth. How do I do it? One day, one moment, one person at a time.
xo dedicated to all we’ve loved and lost–far too young, far too many
It's not easy living in the 2%. But I'm still living. It's tough being so far away from most of my friends and family. I recently participated in a lung cancer walk. I was a speaker and shared my story at the event. If my mom and sister wouldn't have come from out of state, it would have been me and Jeremy, team of two.

At times it feels like it's just me and Jeremy against the world, against lung cancer and against the clock. More often than not, lately, it's me against him and him against me. We butt heads over the tiniest of things.  In the past we've recognized this behavior and realized it wasn't us. It's the stresses of lung cancer on our relationship. So for those periods of time, it's just me against everything I have and everything I don't have control over.

The next time you see me begging for your support for an upcoming event and we live in the same town, it's not all about the money and donations. It's about needing time together and your presence in my life, how ever long that may be.