Caregiver Confidential
On Coping With a Sibling's Advanced Cancer, and Clearing Regrets After Loss
By Steven Szalay
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Less than a week after I returned to Hawaii from my first six-month deployment as a submarine officer, I received a text from my older brother Joe. “Have you spoken to Mom today?” Without a second thought I knew I would be on the next flight to New York.
My older brother Mike, a sales engineer in Long Island, NY, was giving a presentation at work when he had a seizure out of nowhere. He was perfectly healthy one day, and the next they were doing brain scans and identifying a mass in his brain.
Days later my brother was scheduled for surgery at Memorial Sloan Kettering Cancer Center in New York City. Dr. Gutin, a preeminent neurosurgeon, was going to perform brain surgery to remove the mass. Thinking back, I can’t remember if it was an hour, day or week between the seizure and that surgery; time just slipped away. No time for questions, no time for understanding, only time for immediate action. What was going to happen next? None of us are doctors. None of us knew anything.
There was this hierarchy of fears you experience. There's the immediate fear of hoping the surgery goes well, because it's brain surgery and, regardless of the outcome, they're opening my brother’s skull. And then there’s the fear of what happens after the surgery: Would he remember who we were? And, of course, what would happen if the tumor wasn’t benign?
As we waited for the outcome of the surgery, time became overly abundant. How do you keep your mind occupied when it feels like the walls are closing in? Some of my family found solace in conversation, while others sat silently and prayed. Neither gave me comfort.
What helped me was looking up everything I could find on brain tumors. I researched everything — tried to understand the tumor grading system and what the implications were, as well as getting a grasp on the standard of care for brain cancer. I was a nuclear engineer in the Navy, and it was part of my DNA to need to understand what was going on. I guess all of this research was about trying to find control in a situation that I had absolutely no control over. I thought, “Maybe I can't affect the outcome, but I can at least understand the outcome.”
On why caregiving is like being a “chief of staff”
After the surgery was over, Dr. Gutin met with us while Mike was in recovery. The surgery was a success, but the results of the biopsy less so. “Michael has an anaplastic astrocytoma.” My heart dropped, as my recent foray into neuroscience had already familiarized me with what this meant. Mike would need radiation and chemotherapy.
Mike awoke around 4:00am, and he wanted to get out of bed and walk around the hospital floor, so I went with him. The conversation was light, making jokes about the surgery and chatting about my recent deployment. Then he stopped walking, turned to me and asked, “Hey little buddy, what’s the deal? What’d they find in my head?” He hadn’t yet learned his prognosis, and somehow it fell on me to break the news. I was like, “Look, man, you have a grade three anaplastic astrocytoma.” He asked me if it was curable, and I told him that it wasn’t — that he was going to be living with this for the rest of his life. It was very hard to tell him that but I felt pride that I was able to.
Since I was living out of a backpack, I stayed in the hospital the entire time my brother was admitted. In a way, being a caregiver is like being a chief of staff. I didn’t want to force him to have a conversation if he didn’t feel like it. I had my headphones with me, and I was fine to just sit next to him, even while he was sleeping. If he was awake and he wanted a juice or something, I’d just get it. If he wanted to shoot the shit, I would. If he wanted peace and quiet and wanted visitors to leave, I had no problem clearing the room. And if he asked a question with an almost impossible answer, I needed the courage to tell him the truth.
On initiating difficult conversations with a doctor
Not all doctors have great bedside manner, and they don’t take the time to explain to the family exactly what is going on. Also, sometimes doctors are gauging whether or not the family can handle difficult news, or if they have the capacity to understand it. We were lucky that Dr. Gutin explained a lot to us. And I think there is probably a happy medium between causing caregivers to go into shock with too much information — because a lot of it's hard to digest — and not giving them enough information.
You know, a lot of people don't want to face the mortality of a loved one. They don’t want to ask, “Alright, what are his chances? What is the mean survival rate? What's the progression free survival (survival without progression of the disease)? And because of that, you're not as informed, so when it comes to treatment decisions, you're gambling — and that's a problem. I would tell caregivers to ask the tough questions; be the one to start that conversation with the doctor so you know what you’re dealing with.
On coping with a loved one’s advanced cancer
A year after his surgery, I received that same text from Joe. “Have you spoken to Mom today?” Mike had a recurrence. Only this time, the brain tumor recurred to a grade four. We didn’t know if it would be a month, six months, a year, or five years, but what I did know was he was not going to be an uncle to my future kids. It was a very weird, surreal moment to accept that this wasn’t going to go on forever.
Mike and I talked a lot, but we rarely talked about the disease. He was a very, very prideful man and he didn’t initiate conversations about it. So I never really got to know how he felt about it until his physical and mental acuity started to rapidly decline and I could see how upsetting that was for him.
There was this big dinner we had with all of his friends and our cousins and, and I was seated next to Mike. He was quieter than normal, and to some it could seem like he was just enjoying the moment of being around loved ones. But I noticed changes, small at first, but over the course of the dinner they became more pronounced. Difficulty using a fork, confusion about what was on his plate. Being deployed for most of the year, I did not see the gradual progression of this disease. It felt like one day he was the older brother who taught me how to drive, and out of nowhere was this cognitive decline. I could tell that his condition was worsening, but I did not know if it would be months or weeks. That’s a really tough call you have to make when your family member is in that position, but you live and work across the country. My leave was up, and I had to report back to my submarine in Hawaii.
On why some patients get turned away from clinical trials that could save their lives
With Mike, when there was pretty much nothing left to try, we got a second opinion at NYU. The doctor said, “Look, we can maybe get you into this clinical trial.” So we started getting all his paperwork together, but it turned out that he was ineligible for pretty much every trial because he had already gotten two different standards of care, two lines of defense. Plus, the size of his tumor also disqualified him. It was like they were saying, “You’re too sick for a clinical trial.” I didn't understand. I thought, “How greedy are these clinical trials, that they care more about their study than about potentially helping patients?”
Now I work with companies that are continuously fundraising to be able to get their drugs through trial, and I understand that they're not going to get approved if they don't get the exact right sample size with the exact right data set. So that's why they don't care about the individual. They can't, and if they did it would jeopardize the chance for future patients. We didn't know any of that at the time, and even if I did, I’m not sure it would have mattered. It was just incredibly frustrating to be turned away, to be diminished to a statistic.
On living far away from a loved one who is sick
The hardest part of living far away from Mike was that we were out to sea to where I had no cell phone service for weeks at a time. A few days before my brother passed, my submarine was headed inbound for a personnel transfer, as we had been out to sea for several weeks. I was driving the ship, and as I had grown accustomed, called my mom to check in as soon as I regained service. There was no answer, but also no voicemails, so I felt comfortable leaving the top of the ship as we prepared to go back out for another few weeks. Right before I was about to lose the cell signal, my mom called and told me that Mike was in hospice. It took twenty hours to get from the submarine to my brother’s bedside in New York.
Luckily, I was there for the last two days. He was in palliative care and unable to speak, but it was still very important to be with him at the very end, and I know he knew I was there by his side. It was so surreal.
Now, if I were to give someone else advice who is going through something similar, I’d tell them to maximize their time with their loved one in whatever way possible. Hindsight is a real kick in the ass. Looking back, I absolutely regret going to Hawaii. I regret missing my brothers’ last two years, and it is something that is still on my mind to this very day. But that regret must be coupled with hindsight, because I still remember the conversation I had with Mike when I decided to put in for orders to Hawaii. “It’s a once in a lifetime opportunity little buddy!” Sure, if I knew the outcome I would have chosen differently, but I didn’t. Regret isn’t a desire to do things differently, but rather a way to reflect on the sadness of a chosen path. That sadness shaped how I have lived my life ever since. After Mike’s death, I transferred to Connecticut to be near family. I left the Navy, even though I had a promising career, and I have decided to stay in the Northeast pretty much in perpetuity. I drive to every family event I can go to, no matter how busy I am or how inconvenient it may be. I live my life every day knowing that the time I have with those I love matters most.
This article is for informational purposes only and is not a substitute for medical advice, diagnosis, or treatment. Please keep in mind every individual’s situation is different, and you should not take any actions concerning your body and well-being before consulting with a healthcare professional.
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