Read if I Die

AUGUST 28, 2020

Sitting on my desktop is a folder called “read if I die”.  It’s been sitting on my Mac for 13 years. My kids know about it, they’ve never opened it, but they know it’s there waiting for them.  It’s mostly filled with practical information.  To make things easier when I’m gone.  From time to time I open and read through the one letter I wrote to them.  I know that no matter what words I leave them, it will not be enough. 

I write of my never-ending love for them and my pride in being their mother; and for the last time I apologize for having had breast cancer.   

I’ve tried very hard to find purpose in life. Especially since June of last year when I received such a terrible blow.  After 13 years of living with metastatic breast cancer - cancer which leaves the breast and spreads/metastasizes to other organs (in my case brain, lungs and bones) I was additionally diagnosed with Leptomeningeal Disease (LMD). 

 LMD is when the cancer cells spread through your CSF (central spinal fluid) up around the lining of your brain and is aggressive as fuck. And difficult to treat.  Blood brain barrier.  It’s complicated.  LMD has a terrible prognosis. I was given 6 mos. to a year.

At City of Hope, I looked into a clinical trial, but it was risky and involved putting an Ommaya Port in my skull and then pouring chemo into the port.  Sounded awful. I am not about life at all costs, I am about Quality of Life, and the cost has to be reasonable.  Even so, I signed the consent forms; my grown kids and their big brown eyes were there with me.  Ultimately, City of Hope did not accept me on the trial.  I was relieved. 

I began exploring end-of-life options, including California’s “death with dignity” legislation. Talking to hospice, giving away my best purses, and sorting jewelry with my kids. Breaking news to family and friends.

On Amazon, I ordered a large leather-bound Art Journal, imagining that my last few months would be spent making memories. My idea was to take pictures of me and whomever visited and write my thoughts and feelings along with pasting a photo in that journal. Kind of old school.  Maybe even some original art. A way to hold space for goodbyes; love, friendship and shared good times. That was my plan.

Around that same time, I had a talk with one of my friends, actually with a very logical and smart friend whose opinion I respect very much. I needed perspective on quality-of-life and asked his opinion.  I wanted to know what things he’d be willing to give up, and still be okay with being alive.  He shared his views on “reasonable” quality-of-life. I took his words to heart and tried to think about what I would consider a reasonable quality of life. What I’d be willing to accept.

I put all the pieces together for an end of life that had some reasonable quality of life. And I was okay with that plan.  It included spending time with family and friends, the dogs, some writing and some art. I realized I would have to give up Dance; I just didn’t have the stamina. But I still had my friends from dance and I still could enjoy music.

I was trying to stay in front of the light, even in my impending death, I didn’t want to give in to the darkness.  I spent too many of my early teen years feeling invisible, feeling obscured.  Eclipsed.  I prefer the lights on.  
n orchestrating my last days, my plan was to hang out and be seen.  And when pain and vanity took over, and when dignity left, I’d execute my END OF LIFE OPTION ACT, as allowed by the state of California. 

Then in a last-ditch effort, I was accepted onto a Phase I (first in humans), clinical trial looking at using two novel drugs in combo. Thankfully the dose escalation phase was finished, and the MTD (maximum tolerated dosing) was established. By the second cycle I could see that the clinical trial was working. Small cancer nodes melted away flat.  Fire-ants nerve pain improved.  Along with killing cancer, the trial was killing my quality-of-life.

From my first infusion on December 26, 2019 forward, I was not well and had debilitating side effects.  I was over-shadowed by cancer…something I was not used to enduring. 
After going thru 3 cycles on the trial, the one drug I was most interested in received FDA accelerated approval.  I left the clinical trial and returned to my local oncologist to continue on the single drug in hopes of improving my Quality-of-life.

Then--just at the time I was feeling strong enough to resume living a reasonable quality of life-- Corona-Abscura shows up.  And just like that I’m thrown back in the darkness. Filled with fear, I went into double lock down mode and here I am six months later feeling very disconnected and again searching for something reasonable in my quality-of-life. There has got to be meaning along with reasonable quality of life, for me to get up every day. Something to look forward to other than side effects, housewivery and taking care of my Mini dog.

The most valuable and nurturing entity for me is human connection. In real life.  Especially NOW.  With time running out.  I need to see people. And their whole face. Being able to hug. Laughing freely, sitting side-by-side. Driving together. Cooking and sharing meals.  Sharing life’s experiences. In person. In real time. And without fear of a horrid and disconnected death by Covid. My time is running out!

I am dying to leave this quarantine.

I just cannot act on those feelings…that is the divide.  Sometimes my anger at this predicament blows up…into rage, into that ring of fire.  And sometimes my anger turns inward, into sadness and great longing for times past when I could have physical closeness. Be held.

But even a hug would not be enough right now.  Years ago, I remember my wise therapist saying “baby, when you’re starving for a meal and all you’re getting is crumbs, you will never feel satisfied.”

I am starving for a meal. And nothing is enough.