Okay, so those who read this blog know that a clinical trial testing my current drug along with a second chemo drug is finally approved and ready to start bringing testees in to begin. Did I spell that right? Or is it testes? Well, it is true that we who volunteer might be nuts. Anyway, 10 days ago I learned the trial is officially open.
Next they asked for my most recent ct scan report (from late March), and next day they wanted the disc itself. Wait a few days . . . now they wanted my latest bloodwork. Wait a few days . . . I called today and the head research nurse quickly called me back. 1st she said I do not have papillary kidney cancer. i reminded her that three pathologists including theirs have agreed it is papillary. Then she found the correct patient folder and agreed. Then she said that first they want me to come to Bethesda for a Kidney biopsy.
Kidney biopsy? 15 months ago I had that awful lung biopsy to test the nodules that metastasized from my kidney tumor. They cut three chunks out of my lungs because the kidney "is a bleeder". So now the NIH wants to what, verify that what morphed to the lungs is the same as what it morphed from? I don't f'in know.
So, I asked about scheduling and learned that after the long weekend she will figure that out with the biopsy specialist. Supposedly I will know by end of the week. After talking with her (I was gracious) I did not get into an accepting patience mode. i spun for a while. 2nd guessing, what iffing and catastrophizing. In my head I know it will be alright, I can trust God, and I need not worry.
The hard part now, is getting that comfort 13 inches from my head to my heart. Peace, kindness, gratitude, patient, open minded, honoring, serene surrender. It is almost meditative just typing those words.
Our annual recovery convention is this weekend - @ 1200 addicts gathering for fun, food, speakers, workshops, dancing, comedy show and . . . no drugs. 1200 people arm in arm, saying the Serenity Prayer - the room resonates. Saturday night after the dinner, we do a clean time countdown. We start at probably 35 years clean, and a couple might stand up. Then 33, 32, 31, and so on, with higher numbers of addicts standing up as the years get fewer. We will probably have approaching 100 members this year standing for over 20 years clean. By the time we get to my 16 years, I am one of many and the clapping and yelling gets louder. Then as the years and then months go down the chanting starts, "Keep coming back". When we get to just days clean, 30, 29, 28, so on, the room is roaring with Spirit filled memories each of us has of being newly clean. The miracle of each of us multiplied by over a thousand hope to die drug addicts who no longer have to live that way.
I heard a guy share at a meeting last week about being six years clean now, but still feeling the overwhelming love/fear/excitement/joy/bewilderment of being the one addict in that whole convention hall, at that dinner, who had just ONE day clean. He cried telling us about it now, saying he never before felt as cared for and loved as he did that night six years ago. The heady atmosphere of gratitude, the pulsating Power in that room, far greater than the disease we call addiction. It shoots warmth to the depths of my soul and comes back out as shivers of awe up my spine. I know you can feel it too, right now. I go back every year wanting more. Still and addict, wanting more of living clean. What cancer?
Bill
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Med is to medical, as test is to...? Might be time to get the ball rolling.
ReplyDeleteThe recovery convention sounds awesome!
thanks for the grin Little Bro'
ReplyDeleteBill,
ReplyDeleteThankyou for helping me get back to the graditude. I felt the goose bumps, i felt the countdown!!!! I feel today. Thank you for puting ot all back in my heart and out of my head. I love you. See you this weekend.:) Alice
We had a great convention in SD this weekend as well. Too bad they scheduled them the same dates. You know how each step is another, deeper surrender? Well, I guess that's as good as we get amigo. Glad you are trying to stay in that mode, as best you can. Any time you deal with the government there's got to be a lot of bureaucracy involved. Too bad they won't let you biopsy the kidney in Phoenix and fed x them the samples, that would save some traveling.
ReplyDeleteWe leave on Wednesday for three weeks. I'll be keeping you both in my heart.
Good Luck with NIH !!!!! Keep them on their toes! Keep asking questions and expecting answers that you can understand. This may be their trial, but just like with the file they are not infallible , you have to keep pushing them. Not bossy, just an involved patient.
ReplyDeleteAs to the gratitude, I understand. 20 people saying a prayer in unison is a powerful moment, and the more people actively involved the more powerful. The more people you have committed to the cause, you get an exponential growth in the power of the prayer.
Keep up the posts.
Call if you want to talk!
Preston