Chapter 1: It was 6 AM and I hadn’t slept yet. I had just driven myself to the airport after abandoning a weekend vacation with my husband and two children. Tears streamed down my face as my one-way flight to Phoenix took off from Louisville. Thirteen hours earlier I found myself pulling into a Target just outside of Indianapolis to pick up nighttime pullups that we had run out of just before our trip to a friend’s wedding. What is normally my happy place was instead replaced by a fog as my dad called out of the blue.
“We are at the ER. Your mom had an MRI this morning and they called to say go straight here, she has a brain tumor,” he said shakily. My mom’s never-ending sinus infection of the summer, that was already worrying us all, was not a sinus infection but rather something much more serious.
As I navigated the next few hours of decisions, I had no idea what I was about to face over the next two and a half years. I would become a caregiver for both of my parents and ultimately watch them lose their own health battles nearly a year apart from each other all while parenting, working, and PCSing.
I was a part of the Sandwich Generation, a phenomenon first described in the 1980s to describe adults who were caring for both aging parents and young children. And I was about to do that from states away.
Prior to that fateful call of Labor Day Weekend 2019, life had been the regular crazy military life. My husband James and I met in college, had been married for eight years, were on our fourth duty station together, had two beautiful girls that were 3 years old and 6 months old. I worked remotely for a nonprofit doing communications, we’d endured two deployments and countless training exercises, and we were finding our rhythm as working parents of two kids.
I had grown up in Phoenix, AZ; my parents still lived on the same street that I grew up on. My mom had battled and defeated breast cancer 10 years earlier during my senior year of college. She had endured a double mastectomy, lymphadenectomy, reconstructive surgery, chemotherapy and radiation. For 10 years her scans had been negative. In all of our minds, the cancer was gone.
Back to the call – it was instantly clear that our weekend plans were over. We turned back to go home to get me on the first flight home to Arizona, by myself. My husband and girls would stay in Kentucky until I could assess what was going on with mom. It would be far too much to bring the kids to a hospital in Phoenix where we had a lot of help but not steady daycare options.
Fortunately, for the first time in our marriage, my husband was in a desk job that was much more 9-to-5 with an understanding command. Our girls were in full-time care at the CDC on base and we lived near some of our closest friends. My husband said, “Go, I’ve got this.” And so I boarded that flight alone, knowing it would be weeks before we were together again but that maintaining my children’s routine at home would help us all.
The next days were a blur – I remember going to the hospital as soon as I could after landing. My mom was in the Neuro ICU awaiting surgery on her brain tumor. Fortunately her tumor was not impacting major bodily functions, so more pressing surgeries took precedence. She was relieved to see me; since her first bout with cancer, she had preferred me as her primary health advocate and caregiver. My dad, who was 17 years older than my mom, was not in great health himself, tracking mom’s various health updates alongside his work and own health was a lot. I quickly put myself in charge, taking notes, making plans, and keeping family and friends updated on her health.
My days were spent by her side, switching between watching her rest, talking with her, doing some work (although my work team was great and take time off), discussing her care with doctors and nurses, and attempting to take breaks. I tried to continue pumping breastmilk, but failed spectacularly and ultimately weaned while my baby girl thrived on formula at home. I FaceTimed and made video recordings for the kids. But my mind was almost always at the hospital.
While mom waited, she made friends with all of her nurses and even nicknamed her tumor, which I regret to inform you isn’t fit for publication. She had MRIs and scans to see what else, if anything, was in her system. And finally she had surgery, which went very well. Then we got all of the test results back, we knew what we were dealing with, officially.
First, we learned that the tumor was caused by the same cancer that she’d previously had, an estrogen positive breast cancer, it had crossed the blood/brain barrier – a rare occurrence. Secondly, the cancer was in her spinal fluid and around her brain. No other tumors were found, but cancer cells were everywhere. I did what you shouldn’t do – I googled it. The answer was not a good one. But I kept that information to myself, I didn’t want to think about how little or long of time we had left together. I refused to believe that what I read was the answer for us.
Mom recovered quickly from surgery and came home, tired but in good spirits. We met with doctors to determine paths forward which included a pill to target the estrogen cancer for the rest of her life and whole-brain radiation in the coming months.
As life in Phoenix was becoming “normal” aka not spending 24 hours in the hospital, it was time to put my mom hat back on – trading stress about the tumor to stress of being apart from my family. I missed the simple things like hugs from my girls. Fortunately we’d already had a trip planned to Arizona that month for a wedding, so we moved some flights around to get the kids to me sooner while my husband had a TDY nearby. Juggling naptimes, big toddler feelings, kid entertainment, and some work alongside a recovering patient was a lot. I had less downtime and if I’m honest with myself, less patience for it all. But I did something that I have always been bad at doing: asked and accepted help.
If someone offered to bring over food, I took it. I asked who could watch the girls for an hour or more so that I could take mom to an appointment. I asked to borrow kids’ toys. If mom was up for it, we had people come hang out with her. Caregiving is not a something to do by yourself – it is so easy to think that you can do it all, but you can’t, so say yes to help. Take things off your plate.
I spent the last weeks on that trip with just our baby with me, James returned home with our older daughter for work and her routine. It was still so hard to separate and not have all of my people with me, but I had to wrap things up, for now. With family scheduled to return for mom’s upcoming week of radiation, dad and others on standby for appointment driving and food, and friends a phone call away to help, I felt better about finally leaving. I’d been in Phoenix for over a month when it was all said and done. But I left a part of my heart there as I flew home to Kentucky.
I knew that this journey wasn’t over, but mom was feeling better, she wanted to get back to her work, and as she always had, knew that my place was not in their house anymore. My phone at my side to answer any and every call from Arizona, I returned to life. Full-time work, both kids in daycare, and life as we knew it, with plans to return for Christmas.
Come back every Wednesday to walk this journey with Jessica Hall as part of the MilSpouse Memoirs, stories brought to you in chapters, one week at a time.