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Lauren Postyn, caregiver for mom Susan Schultz, a pancreatic cancer survivor
Thanksgiving, Chanukah, Christmas, New Year’s -- the holiday season is upon us, a time to practice gratitude for all that is good in our lives, and recognize that difficult times often go hand-in-hand with the good. Watching my mother accept her mortality – and turn to hospice after fighting pancreatic cancer for so long – has been an opportunity to put these lessons into action, to appreciate the present moment. I try to focus on being thankful for the time we have together. While I watch from the sidelines of her journey, I am amazed that my mother’s upbeat attitude remains intact.
Discontinuing chemotherapy or any curative treatments was a decision made between my mother and her oncologist, when there were no more new therapy options and chemotherapy would do more harm than good. Needless to say, it is a harsh reality and bitter pill to swallow. Her oncologist said, “Focus on quality of life.” What does that look like when time is limited? I’ll tell you – it looks like a giant hug of gratefulness sprinkled with tears.
After four-plus years of fighting the fight with umpteen tests, treatments and doctor’s appointments, it’s liberating to suddenly have all of this free time. Obviously, we were all devastated by the news that chemo was no longer an option, yet we were relieved my mother would no longer have to endure the horrible side effects associated with the treatments. Also, without trips to the cancer center every other Tuesday, we could spend our time in different ways.
With our newfound liberty, we managed to get to New York for a week in July. We have also had successful outings in and around the Raleigh-Durham area, like special excursions to our favorite places (TJ Maxx and Marshalls) and strolls in my mom’s neighborhood. Recently, my mother, sister and I had our first slumber party, treating ourselves to mud masks, ordering in from the Cheesecake Factory and watching funny movies.
Driveway Drinking, a new twist on happy hour since COVID-19, has become a favorite pastime for my mother. With her friends and neighbors, we reminisce about growing up. I’ve been privileged to learn more about my parents’ lives growing up in Brooklyn or Lynbrook and their early lives together. We have talked about some of the sailing trips we took, including when we charted a sailboat in the British Virgin Islands. We were hysterically laughing about the time we threw bread in the water while my father was snorkeling and a school of fish engulfed him!
We spend quality time together in small, simple ways as well, like collaborating on New York Times crossword puzzles. She starts them and I attempt to finish them. I never thought I was smart enough; my mom gave me the confidence to try. We’ve tried various flavors of ice cream, as my mom has become quite the connoisseur of all things ice cream, enjoying it every day! Even if my mom is resting, and am quietly reading a book, I savor these moments. There is something to be said about surrounding yourself with those you love and care about. And this my friends, is what it is all about.
While all is good, I am quite cognizant that the current situation is tenuous. As such, we enlisted the help of professionals more equipped to handle sudden changes in our delicate balance. From the very start of this journey, we never uttered the “H” word, as it wasn’t on our radar. Even mentioning it was considered taboo. With trepidation, we introduced it to my mom. Hospice. As frightening as it sounds and as much as I hate to acknowledge it, this is where we are. I am extremely grateful there is an organization that provides this care.
Some may say we contacted them way too early, that my mother is well enough to continue living on her own. With hospice’s help, we aim to keep it that way for as long as possible. Time and again, my mom has been the outlier, the one who has beaten the odds. She proudly represents the coveted 10% that survive pancreatic cancer five-plus years.
Mom is a master at resiliency, an irrepressible cancer fighter, even at this stage of her life. She is the boss, the reigning Queen of Everything. Don’t let the pretty face and small frame fool you – she is fierce. She recognized that she needs more care than we can provide and asked for help -- a tremendous decision. And while involving hospice is still new, we consider my mother’s nurse part of our inner circle and a member of the family. She is a trusted partner and caregiver, not only to my mom, but to me and the rest of our clan.
By involving hospice, one might think we gave up and admitted defeat. It’s quite the opposite. We are choosing to have hospice as a partner in my mother’s care. Their thoughtful and dedicated staff help us understand what is happening and what to expect. Hospice has helped to find the magical medication cocktail that provides relief so my mother can continue to live. She is able to enjoy her friends, family, grandchildren and her beloved grand-puppies. And for this holiday season that is what we are doing!
Hospice was the right decision for my mother to continue experiencing life. So, the next time you mention the “H” word, know that it really means gratitude!
Lauren is a contributing writer at PanCAN, essayist, poet and blogger. Find her at www.laurenpostyn.com/blog.
