All in the Family: How I Navigated those Sandwich Years

In Last Nerve: A Memoir of Illness and the Endurance of Family, I tell the story of what it was like to juggle the quadruple-threat of caring for my husband while he had lymphoma, nurturing my son as he struggled through high school, and watching my Nanee die of C9orf72 ALS. All while dealing with the diagnosis of being a genetic carrier of the C9 mutation. When I look back on the challenges of those years, it honestly feels like it was happening to someone else. I actually can’t believe that was me. I have a hard time wrapping my head around the fact that my younger son, Alex, weathered the storm as well as he did. And that Kirk, Ethan, Alex, and I are closer now than we ever were blows my mind. How did I do it? How did we do it?

The easiest answer is that Kirk and I managed to stay married through it all. Early in our relationship, Kirk had his first cancer. It was MALT (marginalized tissue) lymphoma, and it was confined to his stomach wall. He’d been suffering with the pain for years, since we were engaged to be married. Ethan was a year old when Kirk began to faint from anemia, and we knew something was seriously wrong. We were told that radiation would be his course of treatment. It was a slow-growing tumor, and it hadn’t metastasized. He endured several rounds of radiation, right about the time Ethan first started to walk. We’d just moved to Marin County after living in the city. We didn’t really know anyone yet, so we didn’t have a reliable community to count on. And our family lived thousands of miles away. We learned how to rely on each other. We learned how to ask for help. We also learned how to find resources for ourselves, like a good nanny for Ethan when I had to go to the oncologist with Kirk. It wasn’t easy, but we did it.

Early stressors, like a spouse’s cancer, can test a relationship, but we emerged stronger together. It taught us how to deal with other challenges, like losing his father, Jerry, to dementia a few years later. We also built a new house, which I’m told, can really test a couple. Compared to cancer, it was a cakewalk for us. We always made time for ourselves as a couple. We went on weekly date nights, even when things were tough. We communicated well with each other, and no matter what we were going through, we were always best friends. So, when Kirk was diagnosed with a second cancer, we had already had lots of practice.

This cancer was much more serious. It was metastatic stage 4 large B-cell lymphoma and it was in his marrow. This time, he needed chemotherapy. Once again, he’d been in pain for years before he got a diagnosis, and once again, I stood by him as a caregiver. But his illness wasn’t the only thing that we were juggling. 

This time, we had two kids, and one was really struggling in school, with friends, and with his family. My mom, Nanee, was in the middle stages of ALS, which meant she needed more care than she’d previously had. And I was diagnosed as carrying the same fatal gene that my mom was dying of. Not to mention that I was also going through menopause.

“The Change” is something people don’t really talk about, but having gone through a ten-year experience with it, I feel like I’m an expert. I had hot flashes and drenching night-sweats that kept me awake, which made me depleted during the day. My mood-swings made me feel like a pubescent teenager, and when Alex, then 12, said he was feeling hormonal, I think I said something like, “Testify, my man!”

I started to feel like I was cracking up. Sweating through the night made it difficult to concentrate on the tasks at hand during the day. I asked my doctor for a prescription for Ambien. It helped me sleep, but it also erased my short-term memory. Once, I even forgot to pick up Ethan from his afterschool tutor. I started seeing a great therapist, and eventually, I went off Ambien and went onto Lexapro. This antidepressant/antianxiety drug wasn’t exactly a panacea, but it helped me concentrate on the important things, without having to stress out about the small stuff. I felt the cloud of forgetfulness go away and felt a bit more clear about things. It smoothed out the jagged moodiness of menopause.

Another thing that helped me was talking to friends and relying on them for meals, sanity hours, and help with the kids. Ethan had so much trouble getting along with his friends that he often felt lonely and depressed. Also, he was experimenting with drugs and other dangerous activities. He struggled with school, and was often ditching class, or walking out during class. My book details some of the trickier things about his behavior, but let’s just say he wasn’t an easy kid to live with. Being able to talk to friends about our decision to send him to therapeutic boarding school was very important to me, especially since Kirk was going through cancer treatments. He’d always been my sounding board for tough topics, but he was busy fighting for his own life.

And then there was Alex, who had his own demons to fight. His dad was sick, his Nanee was dying, and his brother was off in Utah, learning how to live with his family. His mental health was just as fragile as mine. Because I had a fantastic support network of friends and community, and because I made the effort to shore up my own mental health, I was able to show up for Alex, too. I made sure that all of the things he was passionate about – music lessons, theater, and his own friendships – got my attention. When things got hard, we relied on each other. There were days when a hug from him got me from point A to point B. And I think he felt the same way about me.

Ultimately, I realized that self-care was necessary for me to get through those crazy years. When I had to fly from California to Florida to be with my Nanee when she was dying of ALS, I only had the strength to do it because I’d worked out at the gym, seen my therapist, hung out with friends, and gotten hugs from Kirk and Alex. I can’t say that it was easy to go through the sandwich years between 2016 and 2020, but I’m sure it was easier because Kirk and I already had muscle-memory from previous traumas, like his first cancer. When you have the fortitude to deal with challenges like illness and death of a loved one, it’s easier to care for yourself. And when you care for yourself, it’s easier to go through the tough stuff.