Month: October 2025

Infusion day, October 30

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Health update: Pain and fatigue 5 out of 10 at start of day, increased post pemetrexed. We were at our 9 week for the B12 injection. No clue how bad I’d feel without it! 😅 (laughing emoji with a drop of forehead sweat)

I’ve learned that the Keytruda and carboplatin were nice diluters for the toxicity of the pemetrexed.

Pemetrexed wipes me out fast and gifts full body pain when infused without its friends. It is the maintenance med for my style of cancer so I allow the infusion day to be what it is. Tomorrow should be a lesser version xxxfingersxxx.

I also need to start using my seasonal light. It’s very cloudy up here. I can feel the impact compared to being on Hatteras.

Death update: no change. 🙂 (smiley face emoji)

~love all around~

Older white woman in a green ball cap and green sweatshirt with black printing that says “you deserve a calm nervous system”. Under the writing is cicada. Shirt artist is Katie Keane of Cicada Collective https://ko-fi.com/cicadacollective/gallery

Oct 10, Facebook post

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Health Update: Rough ride recently. The MCAS reaction to my port has only increased. I called the dept. that does the insertion of them and told them the brand and style that most likely will cause fewer issues. The reason I think that is because a local person who also has MCAS has gone through a bunch of ports, most caused issues. This particular brand has been the least triggering to MCAS. I also got a closer time slot for the replacement, moved up 5 days to the 15th.

I was supposed to have a CT with contrast today, but the contrast portion was eliminated. I’m guessing it was because I just had my chemo treatment yesterday. Had already had the ivy needle inserted of course, but that is just how this week has been going. I have a flush all through my chest, up my neck, and up to my hairline. It is very uncomfortable. Everything aches. I really cannot wait until this port is replaced and a bunch of this stuff settles back down. I do not know how long it will take for that to happen but I expect some relief within a couple of days.

I’ve dumping cromolyn on my port and taking extra doses. It helps some.

On the good news: all my bloodwork including liver numbers have improved. 🎉🎉🎉

Death update: still terminal. 🤷🏼‍♀️
Working on moving my updates to my blog so folks not on Facebook can read and I don’t have to post everywhere. I’ll post here and there.

Oct 15, Facebook post

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Health update: Port replacement happened today. Here’s hoping the MCAS flare will dissipate in time. I suppose expecting that right now is unrealistic. Hmph.

Procedure went well. Was painful, should have asked for more lidocaine, bad call on my part. 🤷🏼‍♀️

Very sore at both incisions, that is different from the first time, but the first time they didn’t have to remove anything first. The part that hurt at the end were the stitches and they took longer because of the scar tissue from the first port. Look at how much I’m learning and how much I get to experience! LOL LOL

Resting today and fingers crossed for a noticeable improvement tomorrow.

Oct 17, Facebook post

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Port replacement: the sensitive skin bandage was still too much for my mast cells. Yesterday, within 24 hours of having the bandage over the 2 incisions, the itching turned to pain and itching had me very disgruntled.

I couldn’t drop cromolyn on it like I had last time because this time they’d placed gauze under the clear window part of the bandage. I’m pretty sure they believed they were helping. I wish they’d been correct.

It took a long painful time to get the bandage off. The hubster ran to the drugstore for paper tape before they closed. Paper tape hurts, too, but it’s not in a place for coban and the bandage was supposed to stay on for 3 days. I had nonstick gauze pads here.

It hurt less than the night before. I removed the paper tape in the morning and added more in a different spot. Again midday. The incisions look fine.

Photo of the MCAS reaction in comment. It is not as bad as when they didn’t use a bandage for sensitive skin.

Angry welts in bright red on skin. Pink and blue pattern cover around the outside

Oct 24, Facebook post

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Health update.

Port wound is healing and the swollen lymph nodes from collarbone up that the other port put into an MCAS flare are slowly decreasing in size.

Things cancer has taught me:

I will never be who I was before I knew I had cancer. Like any big whatzit, this is true for everyone. I realized my efforts to “feel like myself again” were not only futile, but impossible. That person is gone.

Chemo is great for killing cancer cells. It is also great at killing every other cell.

Killing cells hurts. Everywhere. Every day. It’s also tires out every single cell.

Heat helps the pain. Except when it doesn’t.

Moving helps the pain. Except when I move too much.

Stretching helps the pain. Except when it doesn’t.

Rest helps the fatigue. Except when it doesn’t.

My skin is drier, thinner. My veins have shadows around them I’m so see through.

On and on. Resetting my mind to these new realities is a slow process.

Death update. Not much has changed. Still terminal, still doing the things to hang around for years to come.

This Sunday our community death collective named “Return to Stardust” presents our Lifting the Veil death salon 101 again. I’m able to participate this time!

August 30, Facebook post

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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.

Sept 4, Facebook post

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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

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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