My Blog

Jun 27, Facebook post

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Comments will be deleted, no energy to answer

Yesterday was 1st round of curated for my genetic makeup and this particular type of undiffererntiated adenocarcinoma more commonly known as smoker’s cancer. It was far shorter time in the infusion chair. Both Samantha and I were moved off center by the rapidly changing meds and potential side effects we’d mentally prepped for. All changes were great changes and a bit disconcerting all the same.

New meds were shifting up until they entered the infusion port. It was wild. Good, but wild.

I wish I could talk sense about it, but that will be. I’ve been trusting Hillman Teams, built on cutting each research and results who’ve all kept their humanity and turns it towards you.

The port was a success. Some MCAS itching from adhesives because I believe MCAS wants to be a continual reminder that if not the med for it that has cleared up other things who knows when my brain would have found a way to get me to listen. I do not know how far into the future for other humans, but one my messages from the Ether has been that whatever they decide to name this style of mast cell fuckery that’s quickly responded to by cromolyn sodium, it is one of built-in DNA markers that can slow, stop, clear, and warn of certain types of cancer.

Life is weird y’all in the best of ways.

I don’t Google this type of cancer. I’m not anyone’s stat while I’m alive. Dr. Rhee and my lead doc Dr. Malhotra are fantastic.

I’m grateful to the lifetime of spiritual practices that taught me how to untie the hands of the Universe with my small expectations, and so much more that I’ll be happy to talk about later.

Fatigue from the pinpoint radiation is settling in. Many meds to allow this process to do its thing. Sleep hard, wake hard, eat 34000 small meals a day. That number is an exaggeration, but feels accurate.

Falling back to sleep. Take heart, friends, we’ll talk real talk soonish.

All is well, all is well, and all manner of things shall be well. ~Julian of Norwich

Again, all healing energies welcome, none are required. 🥰 💞

June 24, Facebook post

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On this one all comments will be deleted. I do not have extra energy for comments

Healing energies always welcome, not required.

Update:

3rd day of high steroids post spot radiation therapy. Kevin is my med guy because I was certain I was only 2 days high dose. Nope. shakes fist at sky

Residual symptoms seem slightly less today. Haven’t thrown up, good bonus. 😊 💞

Photo tax:
Traveling healing basket.

June 18, Facebook post

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comments might be deleted, it’s not you, it’s me**

I had 3 days in a row of pinpoint radiation to eradicate the brain mets and any residual from the excised one. It is expected to be good for at least a year, maybe longer, and scans periodically.

Learned I’m now allergic to Ativan. Thanks MCAS. The Ativan hangover combined with the allergic skin response was its own little hell for day one into two. 🎉 🤨 🎉

The monster mask was necessary. You are locked in. It sucks, but it is less than an hour. My max was 45 minutes. My min was 30.

The part over your chest isn’t locked and your lungs are free.

Behold the monster!!!!

June 12, Facebook post #2

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2nd, maybe last post for today.

I’m also medically cancer staging wise

Stage 4, Terminal

Per the smart docs at Hillman Cancer Center.

Still have the best teams.
Had follow up with Nuero-oncology brain surgeon guy. Spoiler: he’s thrilled.

Here is my daughter’s summation of a day that lasted thru 6 hours of appts, preps, scans, talking, NO DECENT FOOD, and finally an MRI for pinpoint radiation mapping:

“Neurosurgeon said most of recovery for mobility from surgery will be seen within 6 months and wherever she’s at at the one year mark is about where things will stay. I like him a lot. Very straight forward and didn’t even flinch about a year from now. That leads me to believe he has just as much confidence about this as he did the surgery 🙌❤️💛🧡🙌🌟🌟🌟🙌”

June 12, Facebook post

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Friends. Conversations coming.4 right now keep reminding yourself that I am one of your deathworker friends, and I knew when I agreed to this particular body in this particular time for this particular human body contract that***once I took a first breath the rest of my contract said there would be a last breath***I have known that I am terminal since my first breath. I have known that I am stage 4, terminal, since my first breath.This is important information to try to keep in mind as we navigate this space together if only so you understand the point of view that I am coming from. I will try to gently educate you because I love you.I do not need you to carry any certain belief to stay in this space.

The beginning, first Facebook post, June 4th. All copies of FB posts are transferred as is, typos and all

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Posting to my wall will remain off until I get my bearings.

Not dead yet.
Not expecting to be dead soon.

And…

Went to hospital for suspected stroke (I knew it wasn’t). Long story, details later. Brain lesion metastases from primary lung tumor. I named this one Blessed little fucker because it took out my dominant (left) arm and hand bite by bite over 2 weeks. I ran stroke protocol 34567812 times. Believed I’d pinched a nerve. BLF (Blessed Little Fucker) was resected, all function returned. Minor tweaks thru OT to come. General strength PT for a bit.

Turns out some things I tossed off as aging were tumour gags. LOL 🤷🏼‍♀️

Radiation first, chemo starts on June 26. I’ll have a port. Yada Yada.

Stage 4, terminal but managable, optimism all around.

Do not smoke. Hahaha

Details when I have them. Healing prayers and energy welcome. I’m going day by day with my focus on clearing and joy. We have Hillman Cancer Center and one of the best global teams for cancer, cutting edge tech, research, etc.

Undiffererntiated adenocarcinoma unless new testing shifts it. Not the worst, not the best, many tools.

It is not small cell or squamous cell (worst prognosis), not the best one, either, that’s non small cell basal something and has most tools. 💜

FB wall off while I narrow my focus to health and joy as the treatments do their jobs.

All styles of healing energies welcome regardless of base spirit. Candles, saints, jujus, prayers, etc welcome. I’ll update periodically. I probably won’t answer comments. I will NOT entertain advice, well meaning or otherwise, on my profile. I will not be answering most individual messages.

“Because I’m sure most patients prepare their past history as if they’re doing a TEDtalk.”

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Sometimes I am so obtuse about my own self. Sure, everyone is, but I’ve done bunches of work on myself (whatever the hell that means) and believe I’m fairly clued in about myself. And I am, except when I’m not. There seems to be a neverending supply of blind spots.

Recently I went to a follow up appointment with my new primary doctor. Everything went fine, but I noticed something curious about how he treats me and it took me awhile to figure it out because of how foreign it felt. He was kind. And gentle. And oddly hesitant about ordering run-of-the-mill bloodwork.

Back story: my favorite primary doctor retired about a decade ago. She was one of the few medical people that didn’t auto dismiss me. My retired doc listened and the thing that made her different was her willingness to be wrong. She acted on that willingness. When she told me she was retiring I was happy for her and sad for me.

Since her retirement I tried out different various primary docs, a PA, a nurse practioner, and none were willing to be wrong. I’d get shrugged shoulders. If I’d found a way to manage a symptom that was deemed good enough. But it wasn’t. My whole daily life was built around not doing things to exacerbate symptoms. Because of this my life became small and very curated, while I masked as normal because my body was a mystery. I told few ppl about being sick. It wasn’t worth the reactions.

Fast forward to my first appointment with new doc 6 months ago, who I told about previous medical encounters,  the plethora of tests that showed nothing significant, and named my litany of various and seemingly disparate symptoms. I allowed my frustration to show. I talked about what medicines had worked well for more than a year even when I was doing very poorly.

This doctor was my last shot at trying to get help because I was exhausted by the dismissals and what at times felt like derision from the medical community. It takes an awful lot of energy and forced hope to see someone new, retell all the the things. To be ignored, dismissed, or thought to be a malingerer afterward was too disheartening to do any more if this guy blew me off, too.

I left that appointment with a tentative diagnosis and a script for the one thing that had been working and now I’d be able to take daily, consistently. Honestly, I don’t care if the diagnosis stays tentative because I have treatments that work. I have big parts of my life back that I thought I never would. I’ve had to give up some things, but that’s from covid ravaging what was already broken. Can’t have everything in this body, but I’m better with some symptoms than I have been in many years.

So, back to realizing my recent blindspot. When I left my new doc follow up appointment a week ago I said to my husband, in a surprised voice, “he treated me like I had medical trauma.” Husband said, “yeah!” in a tone that implied it was ridiculous. I was about to agree with him when my brain clicked and I thought “oh”. And just like that I knew, as well as I know my name, that the doc was correct in treating me that way.

I was simultaneously gobsmacked and disappointed in myself for not having seen it. I was relaying this new information to a friend of mine in terms of “curve balls and realizations”. When I said something about “everyone else had medical trauma. I had bad luck. Or something. Gawds. lol” they had the absolute nerve to respond, “Because I’m sure most patients prepare their past history as if they’re doing a TEDtalk.”

~zing~

I cracked up, loudly. Then I responded in the only way one does when they’ve spent bunches of time building an intimate friendship: “Fuck off”

Medical trauma. I have it. Maybe, with more time, it won’t have me.

Grief is Chaos

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Grief is a slippery, dancing, horrible, unavoidable thing. We have so many ways to talk about it, even us deathworkers. We talk about moving with and through it. We say blessings to others of peace and strength. Sometimes we discuss “getting to the other side” of it. Grief isn’t a wall you scale (though it can feel that way). There isn’t a line you finally step over where all of present life returns to the sharp focus of before the grief. Your first grief (though you were too young to know its name) is like your first time having sex, the you afterward can never be the you that was prior to the experience. There is no returning to them. 

When the world shatters you into grief, it is chaos. Loving someone, some thing, any thing means you’ve struck a bargain with grief. When it stomps through the door, it shoves you down, hard. You struggle for air, the rooms are topsy turvy. Everything tilts, shimmers like mirages, and nothing fits – furniture is uncomfortable, clothes rub the wrong way, sounds are deafening or whispers. You are upside down, floating in a debris field you cannot dodge. 

As time moves around you there is less debris, but you see it in the edges of your vision. Chaos lessens, but doesn’t become order. Eventually it settles into a still pool deep within you. As long as nothing ripples the surface, you do feel some peace and can plot your way through this new normalcy.

One pebble. That’s it. One tiny pebble and your still pool splashes that grief back up through your soul, scorching, shoving you down, teeth bared, gleefully taking its next chunk. 

What time does is make the splashes smaller, mostly. Until the pebble is a rock. Then, chaos. Grief doesn’t give way to order. Grief gives way to knowledge. Grief imparts wisdom from that still pool that stays behind. Grief schools us on surviving loss, on the price of love, and on our blessed mortality.

I’m not quite cruel enough to say, “embrace the chaos”. You can’t fully prepare for it. Everyone gets the chaos, there is no secret back path around it. You can expect it. However, walking around every day expecting grief is no way to live. Best when chaos hits to simply remember it. Remember, because you’ve encountered grief since you were born. Remember eventually it settles into a still pool. When it does, embrace the life you’re living as well as you’re able to in that moment until it’s disturbed, again. 

As a Deathworker and intimate partner with Chaos, perhaps you were hoping I’d have better advice, a faster fix. This is the best I’ve got because I too signed those contracts with the blood of incarnation – to love means to grieve later, to take a first breath means to exhale a last one. May we all love and live fully making those contracts worth our blood. Hail! 

O Nome dos Sete – Sobre quando os Guardiões receberam seus nomes

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Foto de Miriam Espacio Em um tempo dentro do tempo, do fogo primordial que queimava no Coração Negro da Deusa Estrela, ela foi chamada sete vezes e contemplou sete mistérios. Sete dias, sete planetas, sete estrelas pulsantes, sete estradas, sete chaves. O primeiro que ela encarou foi aquele que contava histórias. Ela se deitou em […]

O Nome dos Sete – Sobre quando os Guardiões receberam seus nomes