Monday, April 13, 2020

Metastatic Cancer and Pandemics

As someone who has been living with the specter of death breathing down my neck for over 6 years, existing with an uncertain future, it occurs to me that the coping skills I have honed could be helpful to my dear readers.

As I said to my husband in the early days of the pandemic, “it seems that the rest of the world is learning what our life feels like.”

Those of us with metastatic cancer know full well the fear of not knowing what next week will look like, how uncertain the future is. We know the terror of seeing people in your community getting sicker and dying, wondering if you will be next. When every cough or ache could spell your greatest fear. Are you suddenly living a life totally different than the one you were on course to lead? Yup. Sadly, this is well-trod territory for us. I’m so very sad that others are feeling this horror.

Cancer also serves as a magnifying glass for the strengths and weaknesses in your life and society at large. We are discovering the same is true of a pandemic.

As I say whenever I meet someone newly diagnosed,
Welcome. I’m so sorry you had to join us.

So how have I managed to get out of bed every day with this weight on me for close to 7 years? (Well, on really bad days, I don’t.)

My overarching approach is compartmentalization. I take all those terrifying thoughts and pack them into a box and put them up on a shelf. I think in much smaller time frames, and generally avoid thinking into the future. How can I imagine the future when I was told I don’t have one?

There is a similar struggle in this CoronaLand. Who knows what things will be like in a month or even a week? Think smaller. Think about this day, this hour, maybe even this minute. I am breathing. There is sunshine. I can hear a bird. Right now I want to see how this episode of Property Brothers will end.

Sometimes I take the box of fear down off the shelf and sit with it for a while, going through each scary shadow, looking through each awful moment. During those times I find it helpful to seek out information. What new treatments are on the horizon? What glimmer of hope can I hold onto to push away the terror?

I like to call my next strategy Grief and Gratitude.

Make sure to let yourself grieve.
Grieve. Grieve. Grieve. This sucks. Acknowledge all the losses. Big and small. Grieve the future you thought you had. Grieve the missed class trips. Grieve the fact that your beloved small business is on life support. Take time to honor and grieve for it all.

Then when the grief lets up, discover something you can be grateful for. It can be big or small, but I find it enormously valuable to recognize the good things even when everything feels so hard.

People talk a lot about “after.” How we just need to get through this and get back to normal.

This may be harsh, but living with my diagnosis has taught me that what you have is THIS. Right now. This time IS your time. Don’t wish it away. What you have now might BE the good days. So enjoy what you can of THIS.

One of my mantras over the past few years has been “this is the life I’m trying so hard to stick around for.” It helps me remember to find something to appreciate even in the hard times.

And when the absolutely stark raving terror of it all becomes overwhelming, distraction is my recourse.

Watch crappy TV. Go outside. Sing really loud. Jump up and down. Go for a walk. Help someone else. Do something to change your surroundings and your focus so you can give your mind a break from it all.

This, too, will change. Parenting and cancer both taught me that. Just when you think you have it all figured out, it will change. Sometimes for better, sometimes for worse, but always different.

My wish for people in this pandemic is that the worst they get is really bored. It’s the same wish I have for my cancer buddies; that their scans may be boring. Their lab results a big yawn fest. That their consults are not even worth talking about.

Just nice and boring.


I’d be remiss if I left this post without any sort of health update!

I am still on my fancy TPX clinical trial (cycle 16!), and it seems to be holding the brain mets steady. I’ve been having a recurring pleural effusion, and had been going into the hospital for regular thoracenteses. With the onset of the pandemic, I finally overcame my aversion to the pleurex catheter, so I now have a tube implanted in my chest so that I can drain my lung in the comfort of my own home. Actually, Jason gets the privilege of draining it every-other-day. He jokes that he is no longer brewing beer, so instead he monitors the flow rates of malignant fluid being suctioned out of my thoracic cavity. Gotta keep those skills sharp.

It’s funny what you get used to. The kiddos now run in and out of the kitchen arguing and asking for things while Jason and I are busy draining my lung. This is all par for the course in our lives.

As someone who is unlikely to survive Covid-19 should I catch it, I am deeply moved by all the people who are sacrificing to help others - and I’m not just talking about the amazing healthcare and essential workers.

I mean all the people who are selflessly accepting this great disruption to their way of life in order to protect others in society. People accepting hardships to help save other people.

Makes me proud to be human.