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.
LEAN IN TO JOY with BONEWEAVER 