Challenge of My Life

I saw my primary care physician this morning. Dr. Glenn is an amazing ray of sunshine. He has been my doctor for four years. He will sit and talk with me about pretty much anything and his voice is very calming.

He looked at my chest X-Rays that I had done in the emergency room a couple of weeks ago and spoke to the radiologist.  They are both in agreement that they see some spots on my ribs that are quite possibly cancerous. Thank God my scans are Thursday. I am so nervous about what they are going to find. But, I just have to keep remaining positive.

My primary oncologist called today and let me know that I will be starting iron infusions tomorrow for a week. If this doesn't help my anemia, I have to get blood transfusions. I'm praying that the iron is all it is going to take to help my anemia. I asked her if she thinks my cancer may also be in my blood, and this is something she's unsure of. We have to keep watching all of my counts very closely. I hate the waiting game, but that's life. We are always waiting on something, aren't we?

The thing is, you’ve got to pay the piper at some point. When is it time to cry? When is “later” when you’re constantly in a life or death situation?

On paper, we may all be facing the same affliction of mortality. In practice, we are not. Things come up daily, sometimes hourly, that throw my mortality in my face. The reminders of how close the edge is for me are never-ending. I just hate this. Not the cancer per se, but the perpetual state of peril, constantly “making the play” just to survive today’s scan or crisis de jour. I don’t even have words to capture what it’s like to live here. I hate it, but I can’t hate it. I have to find a way to live with it, because it’s not going anywhere. This is my path. I have to figure out how to walk it. Over and over and over. Groundhog day.

It is the challenge of my life to figure out how to hold this truth and carry on, how to live and how to be prepared to die at any moment. It’s such an impossible thing to try to convey to anyone who hasn’t experienced it.

When I talk to others about the struggle of living like this, I’m often told, “step away from the LC world as much as you can, try not to live scan to scan.” I hear that advice, but it’s so very hard to heed with my feet dangling over the alligator pit. Yet, I have to try. Otherwise, what kind of life is this, just surviving in two month intervals between scans, waiting for permission to live another two months?

“One has to decide whether one’s fears or one’s hopes are what should matter most.” (Atul Gawande)

When stated that bluntly, the answer seems surprisingly obvious. Hope should matter the most. Fear does help me stay vigilant; there’s not a lot of margin for complacency with advanced cancer. But who wants to spend whatever time they have remaining, motivated primarily by fear? I have to figure out how to stop perpetually “making the play,” operating from a place of crisis, and let the tears come. Because if I allow room for tears, perhaps I can also, paradoxically, make more room for hope. As the saying goes, the cracks are how the light gets in. Sometimes true strength comes from allowing vulnerability. I seek the courage to let down my guard some, to stop living scan to scan, and instead embrace the life I have — with all the tears, and all the hope, I can muster.

Cancer doesn’t always look like a person in a head scarf. Cancer often looks just like you. Cancer looks like me.

And in the midst of it all, I’m learning every day. I’m learning how to pull myself out of the muck and go on. I’m learning how to minimize self-pity and maximize empathy for others. I’m learning that I have the strength to travel this road, even though I didn’t choose it, and that doesn’t make me special. We are all capable of rising when we must, even if we don’t want to contemplate that. Strength is all around us. Just take a moment to look a little closer at the person in line behind you. They might not look like they have cancer. But they might.

Having advanced cancer feels a lot like walking a tightrope. Creeping so carefully, trying to balance on the slimmest of margins, never any real chance to let down your guard. Every so often a gust blows, but there’s no predicting when. You feel stable, eyes on the horizon, and then out of nowhere the wind comes and you flail and try to regain footing, to reclaim the stability and fortitude necessary to continue.

The worst part about a gust is that it’s impossible not to glimpse into the abyss below as you flail. Just a peek at the long way down can be so much harder to recover from than simply regaining physical balance. Don't look down...but how can you not?

It seems cancer is hell-bent on teaching me over and over how to live with an unknown or precarious future. I’m not entirely sure the benefits of such a lesson. It’s a pretty difficult place to try to operate from, especially as a parent of younger children who need stability. I suppose it fits with the “live in the moment” message that makes a lot of sense...especially now.

Additionally, I don’t think it’s possible to travel this cancer journey without picking up a touch of PTSD. One day you think you are healthy, the next you hear you have cancer. Life changes in an instant, and your relationship with your body is forever altered. The internet is full of stories of lung cancer patients who are doing well, and suddenly take a turn for the worse, jumping from stable or even “no evidence of disease” to unstoppable metastases and hospice in a matter of months. These stories keep me up at night because I know all too well now that things can turn on a dime, that a seemingly healthy body may not be, that things you can’t see or feel, can nonetheless still be there.

Rather than fighting against something, I find it more powerful to fight for something. If you’re looking to support someone like me consider sending strength, not to slay a perceived opponent, but strength to restore balance, to find peace, power and wholeness inside themselves amidst a whole lot of shitty, scary fucking chaos. (See, don’t worry, there’s still plenty of room for cursing on this side of the fence too).

Love you all and truly mean it! Time to cuddle with my Callie girl and watch some Investigation Discovery.  Sweet dreams!

Xoxo,

Shanna

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