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. 🤍

©2023 FPHendron

THE SUGGESTION BOX IS CLOSED

Good news / bad news. My esophageal stent was removed last week and thankfully all of the horrific pain has resolved. That is the very good news.

The bad news is swallowing is an issue and it’s going to limit greatly the time I have left.

The good news is I do have some control over how and when and I’m looking into those next steps.

The bad news is that a lot of loving friends, family and community have a lot of their own anxiety and feelings and needs and think this is the time to share those with me. It is not.

And a lot of well-intended messages, texts and calls are hitting my inbox with way too many questions, for which there are no answers.

Since this is my Prelude to Death, I get to call the shots. And one of them is that I don’t wish to have conversations where I have to hear anybody else’s anxiety, speeches or feelings of shock. You’ll have to manage your own emotions.

We’ve had years for these conversations. Now is not the time to ramp up on how you are feeling.  Surely not the time to text constant messages. It’s too much for me.

Email is best.

This is a time that is strictly about me. My one and only death. And all the support you’ve offered and all of the times you’ve showed up—in so many ways, is what sustained me and helped get me to here. Gratitude for so much love, support and good times.

This is where I’m at right now and that may or may not change.

I’ve never died before so taking things day by day and often minute by minute.
Same for my immediate family. We are still in this together.
I love and appreciate all of you❤️

Fighting to Keep my Balance

I’ve got one foot on the ground
And one foot in the grave

And time is standing still
I need more antibiotics
My lungs hurt

Which doctor do I message?
Oncologist?
Pulmonologist?
Gastroenterologist?

Interventional gastroenterologist?
Palliative care?
Nurse practitioner? (My favorite)

I have a new concern; my teeth hurt.
Frantically googling all my new meds. Which ones cause teeth pain?

Meantime the box of morphine sits like a cheap box of wine—ugly, unopened. Shamefully pushed to the back of the meds group. Directions - take x ml per mg per kg per body weight. What?

Nothing about morphine is simple. I leave the box sealed and hidden.

I’ve got one foot on the ground and one foot in the grave.
Off-balance.

Beautiful text messages roll in. I try to keep up but can’t. I feel and appreciate the words. I lean into them. Let them pull me out of the grave and back to firm footing.

I’ve got one foot on the ground and one foot in the grave.  Maybe that’s what we all have. Maybe I’m just feeling the unsteadiness, bridging two realities.

My daughter is uploading photos to the group album. “Mom do you want me to edit out the pics where you’re in pajamas, in bed and not looking well?”
Facetune my Cancer? Brilliant!
I laugh at the thought of Glamming up my Pre-death.
Nope. It’s your album. And this is where I’m at.
In pain. In pajamas. In bed.

The majority of my life tells a different story, but the advances of late disease with this awful pain has zapped my strength.

Jude doesn’t care. He likes my big fluffy bed.

He brings all his favorite stuffed animals and toys into my room. And climbs up next to me in bed. And decides to finally try vanilla pudding. He’s surprised and calls it
apa-see-ah, which is how he says ice cream. Nearly all his words are changing from baby language to people language. He is fluent in Spanish and easily uses the two.

Balexa! Balexa! He’s now in the kitchen, shouting at Alexa. We were painting with dot paints and I made up a song about the dots.

He wants “Balexa” to play this “new” song. My daughter tells him that Yama made it up. But he keeps asking, so she cleverly plays “Who let the dogs out” and we change the words to “who let the dots out”. Instant hit and the song was on repeat the rest of the afternoon.

Anything that makes him happy makes me happy. The evolution of 20 months of photos shows my deep love for this little boy.

Yes, you can see the fat-faced steroid sisters all over my face. And the chemo killing rapidly dividing cells, all over my bald head.

But you can see that most days I had good-enough energy. As you can see lately that my energy is leaving. And pain is making an appearance.

One foot on the ground, and one in the grave.
I’m fighting to keep my balance.

Dying in 14 Days

Small cups empty of pudding fill my kitchen trash.

A big change from the fresh fruit & vegetable peels, yogurt and other healthy foods.

I’m fixated on dying in 14 days

Problems have come up so quickly.

I don’t like the Doctor who “installed” my stent.

First, I thought he was being very mindful going over a variety of scenarios with me.

Now I see it as kind of odd rambling, nervous, not  confident, mumbling, talking out loud in front of me, but not really talking to me.

After recovery, I ask him, what can I eat and when?

Liquids.

He said, be careful, don’t eat mashed potatoes.

I don’t want mashed potatoes.

I don’t want you to eat anything too thick. I don’t want you to swallow the stent I don’t want you to push the stent down.

Swallow the stent????????????

When can I have soup?

Thin soup he said.

Gina asks, can she have chicken broth or potato leek purée or butternut squash soup?

The last three days I’ve had hydration. An IV with saline slowing dripping in to keep me hydrated. Alive.

Hydration is not soup.

He looks at her blankly and says “I’m not good with soups”.

They don’t have a hand-out sheet on what foods I can eat when. I’m getting conflicting information.

And the pain in my chest feels like sharp burning swords. My pain level is about an 11. Maybe even a 15.

I try counting the burning spasms of pain. Thinking if I count, I can focus on the count and not the pain. It hurts so bad that my ears hurt. Stabbing, burning. Knives In.

In recovery the first thing to hurt were my eyelids! Burning burning!They apparently put tape on my eyelids during surgery and then ripped the tape off.

I wake up complaining about my eyelids, feeling raw, burning. I can’t blink it hurts so much.

Gina has some Aquaphor to put on for me.

Then I realize I have a fat lip, and big bruises on my cheek. What the fuck? What the fuck happened in that OR? How could they be so rough with me? I am a human person. This is Cedars-Sinai.

Jimmy Fallon is so cute. He’s on mute, in the background doing his usual lighthearted comedy. He understands the assignment. And he’s great company tonight. While I write. Trying to sort and make sense.

10 more days left to live. I am fixated on that number.

I don’t know how this is going to be OK. Incredible pain from the stent.

I imagine a thin silky tube, maybe a pretty color, going into my esophagus. Holding it open against the stricture and patching the hole into my trachea.

Something body friendly. Feminine. Purple.

But then I looked it up online and almost died right then and there.

it looks like an 8 inch piece of garden hose. Its thick and ugly and worse—it’s lined in metal mesh. Braces for my esophagus. No wonder it hurts like hell. Burning burning stabbing. The pain is atrocious. I can’t manage it. It’s metal scaffolding inside a garden hose. Why didn’t I ask to see it beforehand?

I text my oncologist and tell her my pain is not managed. Help help help.

Palliative medicine calls me back quickly, thankfully, and says I need liquid morphine. Just for this acute phase.

I never take narcotics. He said I really need to take some morphine it will help me. I said I’m too scared. I don’t like how these medicines make me feel.

He said I could drink more viscose lidocaine — every three hours if I want. OK I say I’ll try that and I’ll try adding Advil to the Tylenol.

And my son runs around and fills the morphine, but I don’t think I’m gonna take it.

And my daughter says, mom you might need to take some morphine, it could help you. And I said OK I’ll try.

But I knew I wouldn’t open the box. I can deal with the pain. I can’t deal with feeling out of my mind, or feeling nauseous, or feeling dizzy. Or SWALLOWING the stent. Because what the actual fuck??

And this is how my ending seems to be going. Even though in 26 years, I’ve never known another person living with metastatic breast cancer, who suddenly couldn’t swallow or eat.

And this is how my ending seems to be going. Triple negative breast cancer, spreading like wildfire.

And this is how my ending seems to be going. Even with my mom’s sage advice. “Don’t write the ending”, I can read it.

And with all these crises, I haven’t been able to get enough Chemo and I’m not sure that the chemo I have had and the chemo I’m going to have will be enough In the 10 days that I have left.

I am in dire circumstances. Mostly it’s the pain right now. Maybe tomorrow will be a better day. I just don’t know.  I can’t really deal with any of this. Too much pain. Too much grief.

And I hate goodbyes.