Tag: Terminalcancer4me

How it’s going 4/2/2026

Published on by Boneweaver (aka pjvj)Leave a comment

Thursdays with few exceptions are my chemo + days for 3 out of 4 Thursdays. It’s relentless and though the chemo kills cancer cells it also kills my white blood cells who are key to fighting infections. It specifically wipes out my ABS neutrophils that are key immune cells. It’s a dance, for sure, and fatigue is high when my white cells drop.

Today was chemo + with the plus being added immunotherapy that happens on the 1st and 3rd Thursdays.

Today my white cell count was so low they hand counted my ABS neutrophils to see if I could have the Abraxane(chemo). They decided yes as next week is my off week from chemo.

Dr. Malhotra, Mikaela her PA, and I are on the same page about no immune booster (growth hormone) unless there’s no other choice and then we’ll try a half dose because my mast cell disorder causes extreme side effects at full doses. I was so worn out today I slept thru the ice mittens and ice booties part. For me to sleep thru that level of cold is bizarre. But I diiiidd. Lol

I spoke with the integrative oncology doctor to see about getting some tips for working around my borked taste buds from the dietician (I have an appointment with her). I also am starting a virtual exercise program next week. I had my consult yesterday. My follow up with my pulmonologist is Monday. Busy is busy. Oh and later this month I’m consulting with the palliative care team to see about a pain patch so my sleep is less broken. My next MRI of brain is the 13th.

Almost all my hair is gone now. YoungerBoy gave me a buzz cut for comfort. My eyebrows are almost completely gone. In all visual ways I look like a cancer patient. And I don’t feel like one. I know I’m one. Inner me feels healthy same as inner me feels like a younger version of myself. Perception is so weird.

🎉🎉 FUN STUFF🎉🎉

Co-facilitating Rites of Passage was a promise kept made 9 years ago after a Rites class down in Virginia in 2017. The container was gently and sweetly held. The care and flow thru the 5 layers of the ocean was ideal. My stamina held, with a little dip in the last dance, but that was brief. It was the most me I’ve felt in a long time.

Monday brought exhaustion as did Tuesday, but boy was it worth it to be in that space with those excellent people. Every single person there brought beauty and vulnerability to the workshop. 💙 🌊 🐟 🐋 🐳 🏖️

Health update 3/19/26

Published on by Boneweaver (aka pjvj)Leave a comment

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

Published on by Boneweaver (aka pjvj)Leave a comment

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

Published on by Boneweaver (aka pjvj)Leave a comment

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

Published on by Boneweaver (aka pjvj)Leave a comment

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

Published on by Boneweaver (aka pjvj)Leave a comment

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. 💙