Health update:
I am still very chuffed, as was my doctor, with the improvement in tumor size in the primary tumor in my lung. It has reduced in size by nearly 2/3. It is the only tumor in my lung and no spread has shown on pelvic and abdominal scan or lung scan. There are two lymph nodes that are slightly enlarged. They have shrunk also,but were never a concern per docs. In a few weeks I will have an MRI of my brain to verify that the surgery, etc remains successful.
Death Reminder: I am still terminal. As are all of us. In my case though we are pretty certain short of me walking in front of a bus what it is that is going to kill me. Stage 4 lung cancer. The goals are to reduce and or eliminate the tumor in my lung so that it does not throw things at my brain. Really it’s the brain that holds the most area of concern. Medical interventions are designed to control and shrink the primary tumor to stop spread particularly to the brain. It is not unusual to have a really good results in the beginning. If you’ve been taking some immunotherapy and have awful side effects it usually means it did its job, in my case both are true.
The goal now becomes to continue the shrinking and or maintain exactly what’s going on now while enjoying the best quality of life that I can for the time left. That means continued maintenance chemo infusions every 3 weeks for a year or so minimum, evaluate, maybe a break from chemo for a bit. Two out of the three my style of cancer specific infusions have now been dropped off. The immunotherapy one because of the bad side effects means I can no longer have that one. Considering the way it wrecked me I am okay with that and exceedingly grateful for the work that it has done so far. The other one I had the last infusion of because that type of chemical therapy usually can only go for the four rounds and done. I still receive B12 anti-nausea and a steroid infusion prior to what will now be my maintenance infusion every 3 weeks.
Not going to lie here, chemo is rough rough stuff. I have never encountered this level of fuckery even with my Myriad of chronic illnesses. It is exhausting and it is debilitating and it accelerates with each infusion.
The last few weeks have been hell on my family because it has been hell on me. They have been exceedingly gracious considering how at times ungracious I have been. Chemo brain and steroid brain together are a terrible combination for any style of relationship. I highly do not recommend LOL
And if not for chemo I wouldn’t get to enjoy the years ahead. Some of the hell should improve with. the reduction in number of meds right now. When it becomes intolerable or when this third one decides it doesn’t want to work anymore I still have many other options. All of these things I have been holding and juggling, wanting to post here. As your friend the deathworker I am also holding the knowing of the impact of medical news whether happy or sad. Waiting until I had some follow-up tests to gauge exactly how to break any news felt right. I am thrilled that I had good news to break!
I thank you all for your continued love, prayers, energy, and support. They mean so much to my heart and soul. Ever grateful I send love and gratitude back through the ether to all of you. Blessings all around.
Author: Boneweaver (aka pjvj)
Sept 4, Facebook post
Friends, it has been a week. Sunday I was able to go to a book club and later go to OlderBoy’s for dinner. It was a great day that had me feeling like the person I was pre-chemo. I’m so glad I did Sunday.
Come Monday, new side effects/body trashing from chemo or the prednisone (to fix the chemo assault) were arising and staying. By early Tuesday morning I left a message on the nurse’s voicemail explaining that I believed I had a yeast infection, thrush, in my mouth and throat. A script was called in.
There was a 36-hour delay in getting it because of supply chain issues, yay! Picked it up last evening. Had a few doses and was incredibly nauseated after each one. Called the doc again this morning and left a message about the side effects.
A new Med has been called in. The hubster is picking it up now. Cross your fingers it works for me with no extra side effects! And still I’m so glad I did Sunday. And I’m sad I had to cancel my this Saturday’s plans. But time to kick this thing in the butt and to the curb.
Sept 5, Facebook post
Aaand that’s not all folks!
Decided to spread it out. To be certain this lovely thrush isn’t creeping thru my upper GI tract, partying and trashing the joint, my doc scheduled an endoscopy for next Wednesday. 🔭
Friday is my MRI of my lovely brain. See—> 🧠 how cute!
This week was a week without a trip to Hillman. Excellent.
~love all around~
(eventually I’ll tag these entries)
#deathwork #terminalcancer4me
Sept 4, Facebook post #2
Current listening. May seem morbid at this point in time yet was a favorite prior to diagnosis.
Sept 5, Facebook post #2
Look at this gorgeous bracelet my niece got me. I love it! Thank you Dana Beech Watkins . 💙❤️💜
But so are you
Through the ages , natural stone has been
known for itshealing properties and benefits – it relieves an individual from stress and strain, soothes irritability, fear, anxiety, and aids in recovery . May wearing this bracelet bring you some relief and healing energy.
May it remind you of the love and
support which surrrounds
you always.
Sept 11, Facebook post
I had the endoscopy to check the thrush wasn’t having its way with my GI tract. It wasn’t. Everything looked normal. Yay!
And, the sedation for the endoscopy was significant enough that I regrettably forgot to remove the gauze and tape from the IV site until 8 hours later.
MCAS + *paper* tape = dumbass mast cell overreaction, because why not?
Blue is from the tape. Turquoise is where the needle stick was.
Bodies are stupid. 🙄
Sept 12, Facebook post
So here we are with my latest health update. I had my MRI of the brain this morning. It went w/o a hitch.
Initial results hit a couple of hours ago. It appears to be good news! This along with the shrinking of the primary tumour in my lung means the treatments have been doing what is desired and that is really what I /we wanted. 🙂
MRI result in brief:
Impression
Posttreatment changes as above. The previously described
supratentorial and infratentorial metastases have overall decreased
in size. No evidence of new metastasis.
___________
🖤💀🖤
Deathworker update:
In true deathworker slow-to-do-our-own-stuff fashion I have finally printed off my advance directive. 😃 I’ve chosen my health care agent (and alternate).
I’m already an organ donor so that’s easy. My wishes for continuous coma and/or no hope for survival remain the same… Unhook me and let me go. Yes to hospice when we get there.
Caringinfo.org has advance directives for all 50 states, the District of Columbia, and Puerto Rico. Here is the link for the Pennsylvania one: https://www.caringinfo.org/wp-content/uploads/Pennsylvania.pdf
All other states: https://www.caringinfo.org/planning/advance-directives/creating-advance-directive/
Many useful items on this site. Plan ahead so your needs are known. 🫂 💙
~love all around~
Sept 18, Facebook post
Saw the MRI photos. Big decrease in size of brain mets! Dr. Malhotra was ear to ear grin.
Port Lab woman was flat out mean and scolded me when I told her the port and the bloodwork stab hurt.
Weird day all around. Chemo was canceled due to terrible bloodwork. Breathing still kind of bad so a CT with contrast when we return to rule out pneumonia.
Liver numbers up again. Been threatened with Satan’s tic tacs as that is the only one that will drive the liver numbers down. I have to get more bloodwork next week while we’re away.
Great news on the MRI. Not so much on the other. Oh and getting a revision done on the port since it hasn’t worked since day 1 without the super expensive TPA to open it.
Sept 20, Facebook post
I made a short update post on Bluesky, photo 1. My friend asked if they could rework it into a poem, photo2.
She did great! Mary Samios
@boneweaver.bsky.social
Bluesky Elder
Time is still warped and weird.
Energy is for others. Overall
things are grand as the infused
poisons are dramatically
shrinking the cancer. When your
oncologist grins more with each
new image you know that part is
good. The side effects from the
poisons are what kills you. Over
here staying alive,
September 20, 2025 at 5:19 AM
C Replies disabled
Time is warped and weird.
Energy is for others.
Things are grand.
The infused poisons
shrink cancer with theatric glee,
and the oncologist grins with each new image.
You know that part is good;
it’s the side effects that kill you.
Over here, staying alive,
isn’t that grand?
2025.09:20
Mary Samios
Sept 23, Facebook post
I erroneously thought that the break from chemo would lessen the body pain. Oops, how wrong I was. I may make it to the beach at some point before we leave, I hope so. For now I can sit on the deck for short periods of time and it is glorious. Happy to be here, Sadie is happy to be here, and the hubster has gone across the street to fish. This is pretty much how it usually is with the one notable exception of course. LOL.
Here’s a photo for fun, tell me if you think he’s going to catch any fish today or will he lose his sinkers.
LEAN IN TO JOY with BONEWEAVER 