My Blog

Update about the clinical trial

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Here is the most recent update for the clinical trial. They’ve decided to close phase two. Phase two is the one where everyone gets the drug and it is the one I wanted to be included in, and because they had spoken to me already about it all I had to do was sign the paperwork so I could be slipped into the study. Earlier today I signed the paperwork.

A couple more things have changed. There will be fewer scans then were originally intended. They don’t need them since they are closing this phase of the study they don’t need to track for the future people in the study. It is a 6-month trial of the radioisotope. The radioisotope will be given once a month along with the new chemotherapy drug.

The chemotherapy drug will be every week, but I was granted 2 weeks off in April and two weeks off in June. We need the two weeks in April in order to pack all of our stuff away for rental season down on Hatteras. The two weeks in June are for family vacation. The side effects are supposed to be worse than the pemetrexed, however, it shouldn’t be worse than when I was on keytruda, carboplatin, and pemetrexed all at the same time. I start the new chemo med in 2 weeks on OlderBoy’s birthday.

In the next two weeks I should be getting an updated PET scan and an additional PET scan that they inject the tracer for so they can get a good look at the aspects of the tumor this med is supposed to recognize to deliver the radiation. The trial medicine is supposed to begin on March 4th. I feel good about doing this trial and I hope for great success!

Terminalcancer4me update, Jan 30, 2026

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I had the meeting with the clinical trial doctor yesterday. The study is in phase two non-randomized and that is far better than phase 3 randomized. If I qualify for the study it will last for 6 months. I will receive a radioisotope once a month during this time. I will also receive a different medicine as a chemotherapy infusion on a weekly basis during the 6 months.

If I do not qualify for the study I’m not sure what happens with the chemo, but the clinical trial doctor said that in the not too distant future there would be more trials for my type of lung cancer that I may qualify for.

I need two separate PET scans to determine if I am qualified for the study. The next 6 months looks rough if I qualify and maybe also if I don’t. Please keep the magic and prayers coming. I would like to qualify for the study and I would like for the radioisotope to work wonders on the tumor. Thank you so much! Love all around. 💙

COVID-19 and Scarcity Mindset

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I’m disheartened by the cruel words I’ve seen directed at those stocking up at the stores and online. Our society and capitalism have fueled a scarcity mindset since the depression to drive profits and keep people in fear. The empty stores shelves are that mindset in action.

My dad was born just a sneeze before the depression and he had scarcity written into his bones. It didn’t matter he had a steady office job with decent pay. We lived with many shelves of extra paper products including TP. Extra canned and dry goods. An extra full size standing freezer and second standard fridge/freezer in the basement, all stocked. And every night before he left work he called my mom and asked if she needed anything from the grocery store. His hoarding extended beyond groceries and included money keeping him from enjoying much of what he’d planned so long and hard for due to scarcity. This mindset never left him. In fact it was reinforced when USSteel failed, the company he worked at for 30 odd years yet he felt safe because of the habits his scarcity mindset had created.

 

Scarcity mindset is real, it’s based in trauma, and it’s passed down generationally. It leaves an imprint so deep that even in times of surplus it shouts from the darkness at us. And it serves big business of every type so capitalism does nothing to ally its fears. I cannot impress on you the level of restraint I’ve needed to “only” have 2 extra packs of TP on hand right now.  Not shopping more has me stomping down panic. I’m battling a lot of memories. I’m battling the voices in my head. All to resist the over-culture’s implanted fear, my family’s ingrained fear, and the anxiety COVID-19 is producing in my world and the larger world beyond.

 

For my love of community, I resist and leave most items in the stores/online. In compassion for my community, I refuse to judge those who don’t/can’t.

 
I ask this of you, my community: join me in this spell or resistance and compassion. If you are able, leave some items for others. If you are unable, share them when called to do so. And always, hold compassion for all of us, especially those who feel unable to resist.
 
Boneweaver
Reclaiming/Feri priestex
 

A Prayer for Our Times

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A prayer created by Reclaiming Pittsburgh during a dropped and open session.

Mycelial Messages

Blessings to those who tend the web,
Connecting and listening,
We are one, we are one.

Blessings to those who tend the web,
I am held and am holding.
We are one, we are one.

Share your gifts, they are needed.
Create new thriving pathways:
Necessity is the mother of intimacies.

Prepare.

Death flowers:
From Rot comes Life.
From Life, Rot.
Compost what no longer serves you.

Blessings to those who tend the web,
Connecting and listening,
We are one, we are one.

Blessings to those who tend the web,
I am held and am holding.
We are one, we are one.

After great chaos, regeneration.
After great chaos, rebirth.

Birth grief, nourish grief,
Slow down and start again.

Love all things,
Love is Life.
Love is Sacred.

Put your hands in soil,
Connect.
Pets, wildlife, the natural world,
Connect.
Know, find, learn,
Connect.

Blessings to us who tend the web,
Connecting and listening,
We are one, we are one.

Blessings to us who tend the web,
We are held, we are holding.
We are one, we are one.

Be one with us,
Be one with us,
We are one, we are one.
No distance too great,
We are held, we are holding.

The time is now.
All will be well,
Connecting and listening,
All manner of things shall be well.

This is how the work gets done.
Changing, shifting,
Ever moving–
Connecting with mycelium,

Blessings to us who weave the web,
Connecting and listening,
We are one, we are one.

Blessings to us who weave the web,
I am held, we are holding.
We are one, we are one.

~Reclaiming Pittsburgh community, created virtually during the pandemic March 2020

Gede Parma (blog share)

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I find their words pure beauty, words in motion.

“Have you ever felt the Magic happen through you? Swoop through your muscles, and bring you to your knees, mouth full of saliva lit up from the inside with runes and incantations. Fates and Gods fusing with our tendons, singing through the neural pathways, and shaking the skins, sloughing them, shifting them, opening us up to older power, ancient power…”

Link below:

I am a witch… what the fuck am I meant to be doing?

Off topic post for Pittsburgh metro area, home FSBO

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PRICED TO SELL
$269,000

4 bd 2 ba 1,981 sqft 119 Jackson St, Harmony, PA 16037; For sale by owner; Zestimate®: $295,700

Link: https://www.zillow.com/homedetails/119-Jackson-St-Harmony-PA-16037/94916539_zpid/


Spacious Brick Cape Cod nestled on the banks of the Connoquenessing Creek in Historic Harmony. Enjoy breakfast at the Wunderbar, treats from two local bakeries, launching your kayak from the Harmony boat launch, or venturing out for an evening of live music at the Harmony Inn, all without starting your car! From the Horse Trading Days in July to the Christmas Festival, Harmony has the small town charm you want, only minutes from the city.


Beautiful original hardwood floors with new waterproof vinyl in the kitchen and baths! Two large bedrooms on each floor. The eat-in kitchen opens to large patio overlooking a 1/2 acre level back yard!  Front Porch is perfect for relaxing! Large unfinished basement, garage, and outbuilding provide ample storage.


Easy access to I-79 with Cranberry only 10 minutes away and downtown Pittsburgh a convenient 30 minutes.  Well respected Seneca Valley Schools! 

How we met

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I know it’s been forever since I’ve posted here, but I love this story.

On this day 32 years ago the hubster and I met on a blind date arranged by mutual friends. We 6 grouped at a table in a bar/restaurant (The Office Lounge) that had live music. He disappeared for 1 1/2 hours to “take care of a household chore he’d left midway thru doing to come out” on the date. Chore: draining a waterbed. I thought he’d merely used an original gonna-ditch-ya line. No one was more surprised than I was when he returned. He feigned insult I thought he’d split, but much later admitted he’d planned the waterbed emptying to have an out if he didn’t like the setup. He dressed down for the date so I had figured he wasn’t interested in dating, anyway. I was wrong. He asked for my phone number.

Two weeks later we went out alone and timing made it St. Patrick’s day. We drank green beer at Lacky’s.We played duck pin bowling and I learned he was as competitive as I was. That evening he interrogated me (he denies this and claims he was only trying to get to know me, but I was there, and he definitely had a check list of questions in his head). I must have passed.

A few months later he proposed. And 6 months and 5 days after we met we got married in my parent’s backyard amongst the flowers.

Happy 32nd dateversary, Dave! I love you more now than then. ♥️

Disparate trauma hold hands

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Watching the 3 mile island docuseries on Netflix and remembering the shadow cast by it. The fear you couldn’t control with reason because you’d spent grade school diving under desks in nuclear bomb drills. I was 18 when the 3 mile island “accident” occurred and I went to see the movie “The China Syndrome”. The audience collectively gasped at the line about an area the size of Pennsylvania being uninhabitable if it occurred. The unknowable around the effects of the deliberate slow daily release of radiation to shrink the hydrogen bubble to avoid an explosion and core meltdown. Then it fades into a memory of a near miss except for those close by who were poisoned in high enough doses to see physical manifestations. Three years later when the core was examined we learned we were a mere half hour way from our nuclear nightmare. Then they pretended a cleanup years later.

Forty years later a global pandemic and that old fear you can’t control with reason rises to visit for a much longer stretch of time than 3 mile Island cultivated. Familiar, and no comfort in that familiarity. Gods know I don’t have the level of naiveté I possessed when I was 18. I wonder what terror my remaining years will witness. And still I hope…

Mindfulness is bloody hard

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This is one of the most difficult concepts for me to not argue against. What do meeeeaaaannnn I’m not my thoughts and feelings?!? Of course I am! Oh wait, thank gods I’m not. With a brain that runs a hundred directions at once, really, thank gods I am not.

My essence, my love that is life force, the whatsit in us that drives and powers all that is, I know are not my thoughts and feelings. It is so much more and so much less than the story in my head. In those sparse and atm rare moments that I remember this, I find peace within.