Before cancer, my life used to revolve around 3 calendars: the university academic calendar, Lily's school calendar, and, in church, the liturgical calendar. Now, I find myself living life in 3-month increments, from one scan to the next. August, November, February, May: those are the signposts that indicate what direction I will go and what I can expect. Even though I've been stable and have stayed out of the hospital since last September, making plans much beyond a 3-month timeline still seems risky. Other than needing to use oxygen while exercising, I feel great and perfectly healthy. And yet, I keep waiting for the other shoe to drop. I'm living a full and joyful life, but there is still background noise, the unbidden thoughts of how long Tagrisso will keep working.
Yesterday Leland and I traveled to Pittsburgh for my 3-month oncology appointment. I was more anxious than usual because I had read the CT scan report from Mt. Nittany Hospital on Tuesday...but I had no idea what the medical-ese meant. It didn't sound good. (Note to self: don't do that again!) An oncologist friend's translation helped put my mind at ease and Leland reminded me of all the wacky stuff radiologists (who don't know my diagnosis) have previously said about my lungs. However, I felt true relief only when Dr. Villaruz said that she thought the scan looked great, with some improvement compared to the last scan. There is a lot of scarring (fibrosis), which is why I still need oxygen on exertion. She said the cancer isn't visible, but it's almost certainly there at the microscopic level. That's why I need to continue with Tagrisso.
People who aren't familiar with targeted therapy (I wasn't before my diagnosis) may not realize that you take it indefinitely; the only reason to stop is if cells develop resistance and it stops working. Then you go to plan B (usually chemotherapy or older targeted therapy drugs). Targeted therapy is different than the common understanding of cancer treatment, where you have some combination of surgery, radiation, chemotherapy, and immunotherapy, and if these treatments are successful, the cancer is gone or in remission. There are usually a set number of treatments and an end point. In my case, I will always be in treatment. This knowledge also disrupts my sense of time because there is no end point where I can say, "After X weeks or months, I'll be done with treatment."
My feelings about time resonate with Kate Bowler's reflections in No Cure for Being Human. Here, she eloquently captures the way that cancer upends our sense of time and false confidence in our ability to plan for the future:
"Time is not an arrow anymore, and heaven is not tomorrow. It’s here, for a second, when I could drown in the beauty of what I have but also what may never be. Hope for the future feels like a kind of arsenic that needs to be carefully administered, or it can poison the sacred work of living in the present: taking my medication, asking about a friend’s terrible boyfriend, and inhaling the smell of my son’s skin as he sleeps next to me. I want to be alive until I am not." (excerpt reprinted here: https://www.mindful.org/coming-undone-but-not-unmade/).
Yesterday, living in the present meant listening to and discussing podcasts on our drive (This American Life and The Retrievals), having a fabulous lunch from a Venezuelan food truck just up the street from the Hillman Center, going on short walks while charging the car, eating dinner as a family, hearing about Lily's orientation day, and enjoying our evening ritual of watching TV/movies, accompanied by tea and a treat.
Dear Esther--Thanking God with you for the continued improvement and good report from your doctor!! So appreciate you sharing your perspective on time and staying engaged in living in the present.
ReplyDeleteThank you, Irene! Dean was very helpful. :)
DeleteYes - we all need to follow your lead and stay 'present' in our lives. Keep on going!
DeleteI kept thinking to myself that it was maybe time for the scan. Thanks for update. I felt such joy when I read that you’re feeling great & healthy. To God be all the glory for how he has kept you & strengthened you this year. It’s always beautiful to read your blogs. I felt some peace coming through this. We always pray for you my dear 🙏🏽😘 hugs
ReplyDeleteI appreciate your faithful support, Alisa!
DeleteDear Esther, there will be an end for your cancer when the new and much more advanced medicine come out. I was surprised how a right cancer pill can be magical for a cancer patient (It is a story from a Chinese cancer patient, you can use google translate if you like to read it)(http://www.caca.org.cn/system/2019/04/15/020013888.shtml). Bo
ReplyDeleteThe above link somehow does not work. Here is the link again: https://wap.cacakp.com/content/detail/id/24
DeleteBo
Thank you, Bo. There are many new, promising treatments for cancer patients.
DeleteThis is an amazing perspective Esther. I am so happy about your news, but also appreciate and enjoy learning from the deep insights you bring from this and let us share with you. Henson
ReplyDelete