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Lauren Postyn and her mom, Susan Schultz.
Lauren Postyn lost her mom, Susan Schultz, on March 3, 2022, to pancreatic cancer. Here, she shares how she continues to honor her mother’s spirit by offering guidance and support to others as well as by staying involved with PanCAN.
Being “accepted” or “belonging” to something is part of the human condition. Whether it’s a professional organization, a team or a club, membership brings together like-minded people with common interests. It reminds me of high school or college when I would play music, ski or go on trips to museums – it was exciting being in a club.
Today, I am a member of a club that doesn’t have a specific name and that I wasn’t asked to join. Honestly, I would never have imagined being part of this secret society. Losing a loved one to pancreatic cancer is the only prerequisite.
I had no idea I was a member of this secret society until I received a call from one of my high school friends shortly after we said goodbye to my mom. She apologized profusely for asking me to relive my mother’s journey, but she and her husband needed something that would give them an idea of what was ahead after her mother-in-law was diagnosed.
While on speaker phone, I rattled off what I thought would help while her husband took copious notes. I was not sure that I had anything to offer as I am not a doctor, social worker or dietitian. When she apologized again, I said that if any of my suggestions helped and if they felt like they weren’t alone on their journey, then it would be worth it.
Fast forward to a month ago… I was contacted by a stranger whose mother was recently diagnosed with pancreatic cancer and she was looking for advice, not only for her mom, but for herself. She did what our family did – scanned Dr. Google for information about the disease. In her search, she found a lifeline – PanCAN!
Through PanCAN, Joanna found me and my essays – the posts where I documented my mother’s journey. I wrote about her diagnosis and treatment and the decision to call in Hospice. I also shared a fitting tribute. Throughout my essays, I tried to convey my mother’s positive outlook and her hope while telling stories about how we made the most of the time we were afforded together. By sharing her 4.5-year battle with others, I wanted to show that no one is alone in this fight and that PanCAN will lead you to someone who will help you find the answers.
While readers may be armed with statistics, recommended doctors and clinical trials, Joanna reached out to me for something different, something my invisible badge of club membership could help with. She wanted to know more about the things that nurses don’t manage, like caregiving tips or how to stay hopeful when the news is devastating. Here are some of the most common questions and concerns I’ve heard:
How do I stop crying in front of my mother?
I would excuse myself for a second and go into the bathroom, run the water, and at the same time let my tears flow. After a few minutes, I would splash cool water on my face, pat it dry and take a deep breath as I went back to taking care of my mom and the next challenge.
I’m afraid that I will break down in front of my loved one. Is that bad?
I think it’s OK to show emotion to your parents as it shows how much you love your father. There were plenty of times I had a good cry in front of and with my mom. By releasing the tears, it can allow you to process your feelings, to let them out so you are then able to move on with the task at hand. If your tears and fears prevent you from being able to function, I would highly encourage you to reach out to someone like a therapist, clergy or a social worker at the center where your loved one is being treated. Often someone is available not only to the patient but family members. Not only did the social worker help my mom process her disease and manage expectations, she helped me in more ways than you can imagine. And it was free of charge!
How did you stay sane when taking care of your mother?
Who said I did not have a nervous breakdown? In all honesty, I’m pretty sure I did. I wouldn’t be human if I didn’t. I would take each thing I had to do and break it down into smaller pieces and then I was able to function. For example, I put together an Excel spreadsheet for my mom (and me) of all her pills and supplements, so she knew when to take them. My sister got my mom an Alexa and set reminders so my mom wouldn’t forget to take her pain pill. The small things we implemented made it easier for the patient and caregiver.
How do I communicate with family members about doctor’s visits?
When my mother was diagnosed and I relayed feedback to my siblings, I was asked “did you ask them this, or that…” and if I said no, it would start World War 3. Obviously, that helped no one. At each appointment, I would record the visit on my phone (be sure to ask if this is okay). I would text the recording to my siblings. This way everyone heard the same thing. Additionally, we had a family calendar to add all doctor appointments. If one of my siblings could join, we would conference them in. We also decided to have one main contact with the doctor to limit his frustration with pesky family members.
I’m not sure what the doctor meant. Am I missing something?
After diagnosis, so many thoughts run through your head that it is hard to make heads or tails of it. It is OK to say to your loved one’s doctor that you don’t understand. Ask them to repeat what they just said or ask them to restate what they said differently. When I first started going with my mom to doctor visits, whenever they brought up labs, medications, etc. I would ask so many questions. And if I still didn’t understand, I would say “I don’t understand.” Also, it is OK to ask the doctor to have sidebar conversations as you want to hear curative percentages, prognosis and when to start planning for comfort.
We received devastating news from the doctor. How do you stay positive?
This one is tough as I am more of a glass-half-empty type of person. However, I consciously try to look for the silver lining in each situation. For example, after my mom’s diagnosis, I was able to spend 4.5 years with her. She was one of the most positive people who graced this planet and I think her outlook helped her battle the disease for so long. And while I miss my mother more than I ever imagined, I am grateful for the extra time I had. She stays my North Star and if I have only a fraction of her positivity, I am confident the examples set by her will get me through some difficult things.
What if I feel like I can’t do this?
Honestly, no one is ever ready to watch a loved one receive a devastating diagnosis, watch a body grow weak from chemo or have a loved one leave us. Unfortunately, I don’t have a good answer to this, except to say it is OK to ask for help. I can tell you that I received countless messages that said, “Let me know if you need anything” or “Can I bring you dinner?” Eventually I said yes. I stopped feeling guilty for accepting help. People want to help and at the same time don’t want to intrude. Asking for help is not a sign of weakness, it shows how strong you are when you recognize that you can’t do something alone.
I feel lost without my loved one. How do I go on?
It has been almost two years since we lost my mom and not a day goes by that I don’t think of her. I made the conscious decision to turn my grief into action. I honored my mother by getting involved with PanCAN. I created a team and raised money for the local PanCAN PurpleStride. Also I became an advocate for PANCAN in Washington D.C. I brought my mother to life by sharing her story with Congress and asking for more research funding.
I have come to learn that my membership in this club – and my involvement with PanCAN -- is an honor and privilege. This membership pulled me out of the depths of grief and supplied an avenue for me to talk about my beautiful mother. It was also the push I needed to be more involved in something larger than myself. As devastating as it is to lose a loved one to pancreatic cancer, using that experience to help and encourage someone else is what it is all about. After receiving Joanna’s email, I wrote back with practical tips to navigate uncharted waters and eventually, we connected on the phone. My involvement with PanCAN means that I’ve helped someone else at the start of their journey. This means my mother’s journey was not all for naught. When I say I wear my badge of membership proudly, I mean it.
Lauren is a contributing writer at PanCAN, essayist, poet and blogger. Find her at www.laurenpostyn.com/blog.
