When I posted that deed on fb and invited others to join in, I found this update.
JinHi's cancer has revised itself and she must now find a new treatment.
"For dear friends and family, old and new, who may be following. I've learned this week that my cancer is progressing again when three new "hypermetabolic areas attached to nodularity and thickening" appeared in the lining of my chest, appearing consistent with the appearance of the metastatic disease. Over the next few weeks my doctor and I will be figuring out what our next move is.
There is a new "wonder pill" that was approved in November of 2017 that, like the one I am on, is supposed to be the next best thing in thwarting my specific type of cancer. This is all particularly difficult news to process these days as Mark and I continue to struggle with recent unexpected changes in our employment status, income, residence, and an ever quivering stiff upper lip and chin.
It's all a teeny bit absurd and surreal really, all the while thankfully realizing that even in times of being without, there will always be so much that we do have. I know that none of this is in any way the worst there is, and I, just about as flawed as they come, struggle with gratitude and fear.
Three moments of irony this week that have not gone unnoticed: I was just gently nudged (ha, not gently, it was Miriam Center after all) to find all my posts on life and my struggles with cancer and print them to inspire me to write, 2) I had an amazing day with the ever inspiring Shannon Kuanfung and her daughters, per request of her daughters to have a date with me, and that led to talks and plans for me to skydive. 3) I had just said out loud the day before that for the first time in decades (and particularly since the lung cancer made its debut) I felt as though I would live to be 50. That's pretty much all I have to say about that for now.
As so many of my fb reminders are telling me, on this day five years ago I was recovering from my lobectomy of the top right lobe of my lungs, thinking we had cured my stage 1 non-small cell lung cancer that we had thankfully stumbled upon early. Three years ago, we learned that the cancer had progressed and I was treated with several rounds of chemotherapy and radiation getting nowhere near slowing the cancer down, and it progressed to stage 4.
About a year and a half ago I began a gene-inhibiting drug that was specifically designed to stupify my Alk-1 gene mutation that was driving my rare form of cancer. After initially almost dying from the side effects of neutropenic fever, sepsis, and pneumonia, we lowered the dose of the medicine and it stabilized my cancer for the first time and stopped growth and spreading. I knew going in that it would not work forever and that it was by no means a cure.
The gene continues to mutate and it has recently broken the code and is making the cancer grow again. My doctor described it as the medicine starting to fail. I think of it as my badass mutant cancer cells hacking the security system. Yeah, my science brain and my heart straddle two different waves.
#grateful #countingitalljoy #cancercellsareamazingbuttheyareassholes #mutant #survivorswagger #strugglingwithsurvival #fiveyearlungcancersurvivor #35yearbonecancersurvivor #lowonenergybuthighonhope"
And to think, just two weeks ago, she was one of the stars in the 20th Anniversary version of "The Vagina Monologues".
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