I didn’t have cancer, my wife did. It didn’t kill her, but in many ways she’s been taken away from us. Treating the cancer was straightforward, because it was benign; the only thing we had to deal with was an 8-hour surgery and the recovery; sometimes I feel guilty calling it cancer, but our experience shows that even a benign tumor can change the family dynamics for a long time. The challenge I faced was making sense of what the tumor had done to our family and our relationship over the years leading up to the diagnosis. The prediagnosis period felt as if we were slowly drifting apart and heading for divorce. I had never let myself say this or think it, but in hindsight, things were not good. Before we get to this, let me explain our situation.
A Family Experience
My wife had a 5-cm benign frontal meningioma in the olfactory groove. It was a racquetball-sized mass directly behind the bridge of her nose, inside her braincase, and pressing up and out onto the frontal lobes (front part) of her brain. We discovered it by the most innocuous of symptoms. Shortly after our youngest turned 1, she was fairly disaffected and the obvious diagnosis was postpartum depression. The odd thing was that she could no longer smell anything, including dirty diapers, which our doctor found strange.
I was told that the reasons for losing the sense of smell are brain trauma, drug use, or cancer. She had an MRI, which was conclusive: benign brain tumor. The location of the tumor also explained her moods and behavior, which were all related to frontal lobe trauma. So, job done: diagnosis, treatment, solution, right? Not so fast.
The removal of the tumor was exhilarating; the day itself was a roller coaster of emotions, helped only slightly by a good friend having heart surgery in the same hospital that day, and thus I had company in the waiting room. I also had 350 of my closest friends in a variety of social media and ongoing texting chats. The support was amazing, but, in retrospect, it is strange that I didn’t know how to ask for that kind of help when the immediate event was over and I needed to vent months later.
The recovery period over the past year, however, has been akin to dealing with manic depression, with euphoric highs and epic collapses. It’s sometimes hard to figure out whether my wife’s difficulties with human connections are related to her recovery or are the new normal. It’s a tough time for all of us, including our 2- and 8-year-old kids.
So, how did we survive? Well, it’s not over. It turns out a traumatic brain injury involves a long recovery period. We don’t know if my wife will ever be the same as before the tumor, and we don’t know if that new person she has become will change over time. The challenges faced as the patient’s partner are considerable.
Luckily, I have a job that allowed me to take 6 weeks off around the surgery, the costs of the surgery were covered by our insurance, and my deductible was within our means. We’ve both been in therapy for most of the past year since the surgery, which helped a lot. We are not the silent types; that would not be helpful.
The Horrors of Our Healthcare System
I have a relatively unique perspective on the patient journey. I’m a healthcare researcher, and I understand the ins and outs of the hospital system, the insurance issues, and the logistics and bureaucratic nightmares that exhaust and terrify many patients.
Even with that knowledge, I found a lot of it horrible. I hear every day our healthcare needs reform, and I agree with that even more after this experience.
Imagine at your lowest moment, a nice-sounding voice leaves a message on your answering machine, mumbling a name and the company, but never saying why they’re calling. When I realize it’s the insurance company, I still don’t know what they want. It gets worse. When I return the calls, I’m not allowed to know what the issue is, because I’m not the patient. But, because my wife just had brain surgery, she isn’t talking much to anyone. Eventually I get them on the phone with her, and it turns out they just wanted to say hi. Another time, they called to question why she had an MRI for a brain tumor.
The horror of this experience is a continuous cadence of inexplicable actions by otherwise very nice people working in a system designed to ruin my well-being, while I’m hanging by a thread. Knowing the financial, organizational, and logical reasons they’re doing it did not really help.
The 75 times we filled out the same patient information form on paper, within the same health system, boggles the mind. Providers are the leading adopters of electronic systems, yet no data we ever put on paper ever made it into an electronic system. We were never asked to use a tablet or a website to enter the data. For all the millions of dollars being poured into digital healthcare, from a patient perspective, by fall 2014 things did not improve much.
The nurse navigator for the hospital, another for the insurer, the one for surgeons, and the nurses and staff in the recovery ward were all very nice, but they don’t talk to each other; they don’t put the patient information in the electronic systems that they do share. So everyone was asking me to act as a data bridge, when frankly what I needed was a hug. As a reasonably savvy health system expert, I thought I had some idea what it would be like going in, but the reality was quite different.
Asking for Help as a Caregiver
My professional experience never prepared me for my part as a caregiver, a partner, a family member, and a husband. I never realized I had my own limitations in terms of emotional and spiritual coping. I never realized I need to ask for help. In writing this, largely with the hope of helping someone else, I’ve come to realize I had a level of buried anger and bitterness I had no idea was there. Instead I’ve been focused on the day-to-day events, and was wrapped up in doing whatever was necessary to keep the family going.
For half a decade I worried I was slowly losing my wife for nonhealth reasons; when we finally found out it was “only a tumor,” I thought it would be easier now. Now I sometimes think that she actually died all those years ago, and that the person I spend my life with now is a ghost. It will be hard when she reads this, but isn’t it harder to pretend forever?
If we’re extremely lucky, our family will be strong enough to weather this, and her brain and emotional functioning will change and evolve to a point where we can have a relationship again. That’s the “funny” thing about a frontal lobe tumor: it takes away who you are. She’s gone in so many ways. That I still love her is not always enough for her, even if it’s enough for me.
So, how would I describe surviving cancer? One day at a time. Steady. Focus on anything else. And go to therapy, lots of therapy.