Tag: deathwork

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. 💙

Grief is Chaos

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Grief is a slippery, dancing, horrible, unavoidable thing. We have so many ways to talk about it, even us deathworkers. We talk about moving with and through it. We say blessings to others of peace and strength. Sometimes we discuss “getting to the other side” of it. Grief isn’t a wall you scale (though it can feel that way). There isn’t a line you finally step over where all of present life returns to the sharp focus of before the grief. Your first grief (though you were too young to know its name) is like your first time having sex, the you afterward can never be the you that was prior to the experience. There is no returning to them. 

When the world shatters you into grief, it is chaos. Loving someone, some thing, any thing means you’ve struck a bargain with grief. When it stomps through the door, it shoves you down, hard. You struggle for air, the rooms are topsy turvy. Everything tilts, shimmers like mirages, and nothing fits – furniture is uncomfortable, clothes rub the wrong way, sounds are deafening or whispers. You are upside down, floating in a debris field you cannot dodge. 

As time moves around you there is less debris, but you see it in the edges of your vision. Chaos lessens, but doesn’t become order. Eventually it settles into a still pool deep within you. As long as nothing ripples the surface, you do feel some peace and can plot your way through this new normalcy.

One pebble. That’s it. One tiny pebble and your still pool splashes that grief back up through your soul, scorching, shoving you down, teeth bared, gleefully taking its next chunk. 

What time does is make the splashes smaller, mostly. Until the pebble is a rock. Then, chaos. Grief doesn’t give way to order. Grief gives way to knowledge. Grief imparts wisdom from that still pool that stays behind. Grief schools us on surviving loss, on the price of love, and on our blessed mortality.

I’m not quite cruel enough to say, “embrace the chaos”. You can’t fully prepare for it. Everyone gets the chaos, there is no secret back path around it. You can expect it. However, walking around every day expecting grief is no way to live. Best when chaos hits to simply remember it. Remember, because you’ve encountered grief since you were born. Remember eventually it settles into a still pool. When it does, embrace the life you’re living as well as you’re able to in that moment until it’s disturbed, again. 

As a Deathworker and intimate partner with Chaos, perhaps you were hoping I’d have better advice, a faster fix. This is the best I’ve got because I too signed those contracts with the blood of incarnation – to love means to grieve later, to take a first breath means to exhale a last one. May we all love and live fully making those contracts worth our blood. Hail!