HOSPICE - Where Do I Fit In?

Finally! I’m working on the production of my book with a lovely woman who gets me AND gets the time crunch. Title: Does This Coffin Make Me Look Fat? It’s an artsy book of words, stories and art. My legacy project for family and friends. So glad to be back on it.

My day to day is still surreal. Tying up loose ends, spending time with my grandson, my kids and also resting. I’ve already put mostly all affairs in order. But there’s an abundance of stuff around here! Especially art. So I’m working on sorting and shipping. Lots of last minute sales.

HOSPICE
The weirdest part of hospice is going from the mindset of attending/solving all ailments and possible cancer problems/progressions, to ignoring anything that can’t be managed from a comfort-only perspective. Which mostly involves pain pills. Except thankfully I’m not in pain.

My biggest problem remains difficulty swallowing and anything other than thin purées is a no-go.

At some point I won’t be able to manage even water. But I’m not there yet. My second biggest problem are my lungs —they are not happy and having no scans only leaves my imagination for how bad they are. Plus the coughing wheezing and shortness of breath. But for now there’s not a lot to do about that either. The rain and humidity does not help!

I have realized that I no longer fit in anywhere. With a change of markers to triple negative, I’m no longer a part of the her2+ mbc community. They are all on active treatment. I am end of the road.

It’s weird after so many years (26) of the brightest and most supportive groups, I just don’t belong. Something else for me to reconcile and grieve.

I belong to the pioneers who take matters into their own hands and decide not to suffer down to the bitter end. In California we have the death with dignity act which allows control as long as you are terminal within 6 months. There are measures in place to independently test state of mind and make sure one is making sound decisions.

The big decision—when to go—remains to be seen. I’d rather stay *but* once I cannot eat, swallow or breathe I imagine the time to go will become obvious.

I’m still in a nesting-out phase. Content to take it easy at home. Rest. Nap. I don’t sleep more than a few hours at a time so that leaves lots of room for napping.

I don’t socialize or chat on the phone. I’m so easily overwhelmed. Or triggered by grief. Or angered by stupidity. Haha.

Again and again I remind myself that all I have is each moment, and to live in the day I was given. Live in the day I am given. Simple yet profound. What other day is there?!

I think a lot about all the people I know and love. And how if it weren’t for covid I might be way more inclined to have people stop by. Maybe if I still have strength once the rain stops we’ll be able to  visit, to reminisce and sit outside under the newly leafed maple tree.

I’m overall so grateful. A little scared. But glad I can still be in charge of me. And that I have time to process all these thoughts and feel as prepared as possible for when the time comes to leave.

I know we’re all in this together. Even separately and even from afar. That’s the community of love. And that’s the one I’ll never leave. Because love never dies. 🤍

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