Author: Boneweaver (aka pjvj)

Health update 3/19/26

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Received the immunotherapy med today. First infusion of each cycle I will get it. It lasts about 6 weeks. 80% dose today to watch for adverse reactions. So far none. I was given IV benadryl first because stupid mast cells (yes, I asked) and promptly fell asleep. Slept a half hour, I think. I’ve been woozy ever since.

After that the Abraxane. Hair is falling out at an alarming rate. Not in clumps, more like a waterfall. I’m so tired of cleaning up my hair. It may stop, I may be bald. No way to know.

It was a long day, we were there for 6 hours. Next week should be lickity split.

Like this cat, I shed like her.

A couch flipped onto its back with gray striped tabby lying on it. Brownish walls, a small chiming clock on the right, a painting of a red heart with roots, a yellow glow around it and a green background. A fireplace mantel with plants.

And there was more of this except today I was in a room with a bed and a view rather than a cubicle.

I’m in a hospital recliner wearing soft booties and big mittens, both filled with gel ice packs. Heated blankets on my lap, a water bottled tilted to my mouth with mitten hands.

Until next time, friends. 🙂 ❤️

2nd car tour

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I made it out of the house for the 2nd daytime car tour. Lunch outside in Nags Head where Amber fed a corvid. A stop at an oceanside beach with great wave splashes, birds, and I gathered sand for a friend. Third stop at a wee crescent beach at Oregon Inlet. Back home for shared dinner courtesy of the hubster and visiting into the late evening.

The difference in my energy level, ability to breathe, and hair blowing off my head in the Wind (thanks Abraxane) is a quite profound difference compared to the last time we were down here. I’m glad to be here nevertheless and see the sunshine, listen to bird calls, plus watch and hear the ocean. I fall asleep at the drop of a hat and I’m exhausted from yesterday, yet I am so pleased we made this impromptu trip!

The photo above is where we ate lunch on the causeway. More photos:

Our grackle buddy, more Amber’s buddy than mine, lol. He never spread his tail to be sure that he was a boat tail grackle, but his tail feathers grouped together looked like he was. Photo is a black grackle on a picnic table with a brown purse at the front and water in the background.
Amber feeding birb friend
These 4 photos are at a beach at Nags Head, with splashing ocean waves, birds, and blue skies
Crescent shaped beach, wee waves, rock wall of protection for this tiny spit of beach. Oregon Inlet is the most dangerous to navigate on the east coast moving between ocean and sound. This beach belies that.
Basnight bridge (that I purposely and incorrectly call the Hatteras bridge) above and the remains of the old Bonner bridge they closed off as a fishing pier.
Beach shot with me in it. I intended to get a photo of Amber looking beautiful in her red sweatshirt, but we know what the road to hell is paved with…
A decommissioned life saving station. I love this building. You can easily spot it coming over the Bonner, Hatteras, Basnight bridge.

Big rocks, tiny dune, on the way back to the car. What a great ass I have! 😂

It was very cold, but sunny, and I am so glad we traveled a little north, then worked our way back. We tuckered ourselves out.

Health update next week.

Health update, I wasn’t accepted into the clinical trial

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There is a threshold that must be met via the light up medicine they injected in order to qualify for the clinical trial. My primary tumor lit up way more than they could’ve hoped, but the two small nodules did not. Because of the arbitrary parameters decided on at the beginning of the trial 1/2 of the lesions need to light up to the threshold to qualify for the trial. I did not meet those parameters. I have spent a lot of time in tears while understanding why I should not have put all my eggs in one basket. It is very hard to soar with hope and crash so quickly. It has been hard to be me and it has been hard to be around me these past few days. I have tried to just sit with it and allow the emotions to flow through me. By doing this, I have crashed my immune system because of my mast cell disorder and have been in terrible pain the past two days. Bodies are stupid. Letting the turmoil course through me and then out  is the best way, otherwise I’ d be stuffing them down only to have them pop up and smack me later. I do not recommend the smack me later approach. It sucks and all the fallout still happens with an added dose of knowing I did it to myself. Wheeee, brains are stupid, too.

 This two will pass I tell myself. The bad passes the same as the good passes. This is a perspective that I hold and yet sometimes I stumble and feel as if the bad will not pass. There aren’t any easy quick tricks to undo this place that I am in emotionally. The only thing I can do is be in it. I try to be in a gracefully, but these past few days have felt anything but graceful. I forgive myself for that. I am sitting with who I am is enough, good enough, just as I am. This practice is a lot more difficult than writing the words is.

There should be another clinical trial in a few months that I should qualify for (fingers crossed) and with that one there is a lower threshold for the light up. The plan right now is to continue the new chemotherapy med, and another one will be added this week, and as long as that is doing the job that it should be doing I wait for the end of phase one to join the upcoming clinical trial. The trial team has my name on the list for the first available opening, and I can take that one if I need to or I can wait until a little bit later in the study when the dosages have been worked out. There are still options and my disease is still progressing slowly. I expect that for the next clinical trial I will be more mentally prepared for the possibility of not making that cut either. And there are more after that coming down the pike.

These particular clinical trials use a radioisotope, and that sounds the most promising for the location of my primary tumor. Because of the location of the primary tumor surgery and radiation are not options. They would be the first course of action if the tumor was located in a different place in my lung. These radioisotopes have a way to deliver radiation to only the tumor itself and not have a negative impact on all the structures around the tumor. This is why my hopes were so high. The clinical team and my oncologist are confident that one of the trials in the future will be the one for me. So for now what I do is survive the side effects of chemotherapy and wait for those. Thanks for continuing to follow my journey. I love you all.

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!