Caregiver Confidential
As His Wife's Caregiver, A Doctor Discovered How the Healthcare System Fails Cancer Patients
By Benjamin Bier, M.D.
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We were 29 years old and about to start our lives together, when my wife Liya — Alula's founder — was diagnosed with a rare form of non-Hodgkin’s lymphoma. After an extended period of long-distance, we were finally living in the same place, and excited about starting the next chapter of our lives together. Liya had just accepted a new job in New York City, I had just gotten into a cardiology fellowship, and cancer was the furthest thing from our minds.
It was during a trip in Utah with my family that our lives would be changed forever. I flew out a couple of days early with my family, and Liya was flying out to meet me. During her trip, she sent me a text from the plane saying she wasn’t feeling well and was having some chest pains. At first I tried to write it off as nerves about flying, but something didn’t sit right, since Liya flew frequently for work. When she arrived at the airport, she was still having pain, and we headed straight to the emergency room to get her evaluated.
The hospital team did a thorough workup, including a CT scan to look for a blood clot in the lungs, which can happen when you fly. As we waited for the results, I truly thought that a clot would be the worst case scenario: that she'd have to go on a blood thinner for the clot, and we’d have to skip out on skiing for the rest of the weekend and just enjoy our time relaxing at our AirBnB.
The scan showed no signs of a clot, which I initially took as a massive relief. I thought, “Phew, we could enjoy our trip!”. But shortly after that news, that doctor came back in and said he had missed a mass in the center of Liya’s chest. It was as if I had fallen through a trapdoor: a moment in your life you never see coming, and suddenly you’re falling through it into darkness. You’re unable to see, you feel paralyzed, it's like all of your senses go completely numb.
I had dealt with scenarios like this countless times before — but from the other side: as the doctor delivering the news to other patients and families. Suddenly, I was both a doctor and a caregiver, and in that position, I discovered these uncomfortable truths:
Figuring out the initial steps as a caregiver is overwhelming without support.
The first phone call I made after calling both my parents and Liya’s parents to deliver the news was to my friend Ritesh, an oncology fellow at Memorial Sloan Kettering (MSK). I give credit to Ritesh for saving Liya’s life, but he also saved my life in a lot of ways. The early days are the scariest time for caregivers; you might be waiting for a diagnosis or biopsy results, and that makes it even harder to know which direction you need to move in. There were many times I would break down crying because of the fear of the unknown.
My mind was running a mile a minute, and Ritesh said to me, “Okay, let’s pause. I’m going to help you coordinate your next steps.” That was huge, because in the beginning, you really have no idea where to go or who to call — and that’s terrifying. Now I joke that every caregiver needs a “cancer guy” — a trusted friend who will say to you, “Let's make some calls and let's figure it out together.”
When people ask me what the first couple of weeks are like, I tell them it’s a lot of time spent being on hold. I always say that the medical system operates two decades behind the rest of the world. It wasn’t until very recently that doctor's offices were required to have electronic medical records (EMRs), and from one doctor to the next, these EMRs still don't talk to each other!
We have incredible technology, but many organizational structures are just really broken. Things are so fragmented and disorganized in the health system that even when you’re a doctor, it feels like an impossible wall to break through to get to where you need to go. Having a trusted friend who can share the burden makes a huge difference.
Patients benefit greatly when a friend or family member can be their advocate in the hospital setting.
Liya’s treatment plan seemed to be working, but based on my research, she was having very atypical symptoms. We took her to the emergency room a lot because of the terrible pains that she was having. I knew it was abnormal, and I kept being told by her care team that it wasn't. One day, I was so sick of it that I looked at the chest X-ray myself, and noticed what seemed like a problem with her heart. I insisted that they examine it, and when they finally did, it turned out I was right: there was fluid surrounding the heart brought on by abnormal inflammation. Detecting it allowed us to treat it, but it was so frustrating that it had taken so much persistence on my part to get to the problem.
In fact, there were a lot of moments during Liya’s treatment that went really awry. And I got so tired of being told everything was all right that I reached a breaking point. During one of her hospital stays, Liya’s oxygen levels dropped low, which led Liya to get short of breath overnight. When I found out, I stormed into the hospital and asked the attendants and the intern on duty why we had done nothing to ascertain why this was happening. As a physician caregiver, I never wanted to let myself act like this, but it was so upsetting to me watching things go wrong and having everyone brush them off.
When patients are in the hospital, there's this illusion that they're constantly being watched. They're really not. Patients are being checked in on regularly — but regularly still means every few hours. And most patients are not under constant observation. If patients don't have any family members that are with them in the hospital, they can be alone for hours at a time. If they can't reach the call button, it is often difficult to get anyone’s attention.
Going through these experiences with Liya really changed how I take care of patients today. To be honest, I used to get a little annoyed with family members that were consistently “bothering” me. I don’t see it as bothering anymore, and I try not to get annoyed because I firmly believe that a family advocate for a patient leads to better care in the hospital. My empathy and sensitivity towards patients’ families has changed forever.
There are few things more infuriating than dealing with an insurance company.
When it comes to medication, there's a lot of variability in patient response. What I mean is that even if a drug is shown effective in a trial, it doesn't mean that everyone in the study did well with that medication. That’s why it’s so important to have a doctor who will recognize when a patient needs to try something else and be open to alternate treatment ideas.
As a doctor, I complain about getting insurance approval for medications a lot. But this instance really, really affected me: Liya’s doctor, who I love and trust, recommended a new immunotherapy drug to use when she relapsed, but because there were major insurance hurdles to get this experimental drug approved, he offered to use the older immunotherapy drug again. However, I was adamantly against this because I witnessed the terrible reaction that Liya had to it during treatment, and I was convinced that she would do better with an alternate medication. Unfortunately, the experimental immunotherapy would have cost $30,000 a dose, or over $100,000 in total out of pocket, if insurance did not approve.
Determined to get Liya the drug, and completely exasperated with the insurance company, we decided to get the government involved! Liya sent our state representative an email telling them our situation, they responded, and the next day Liya’s doctor received a phone call from the medical director of the insurance company letting him know they were approving the medication. These are the lengths you sometimes have to go to, which requires having both the means and the knowledge to navigate the medical web we reside in. The result is a system that isn’t fair or equitable.
Cancer takes a financial toll in ways you might not expect.
There were a lot of unexpected side effects during treatment which took a physical toll on Liya, and I think most people underestimate how expensive it is to deal with those side effects. It’s money that you don't really budget for initially when considering the cost of care.
Liya and I were so fortunate that we had a huge network of people who wanted to give and show their support. Unfortunately, people spent hundreds and hundreds of dollars on flower arrangements that we had to throw away because of the potential risk of infection. We also received a ridiculous amount of chocolate, books, and socks.
It wasn’t until the second time around, when Liya relapsed, that we had a much better sense of what treatment was going to entail and how people could really support us. Liya sent out an incredible email to our entire network, expressing what we actually needed, and the response was overwhelming. We received about $15,000 worth of home medical supplies, Uber gift certificates for getting to and from appointments, Whole Foods gift cards, meal deliveries, and other items that saved us. It was incredible.
Taking care of yourself as a caregiver isn’t possible if you’re doing it alone.
Everyone says, “caregivers have to take care of themselves, too.” That's a great sentiment, but it only works if the person you're caring for is taken care of first. You can't do it all by yourself, and expect to take care of your own needs in the process. You need real help… you need good help. That’s the constant struggle for caregivers.
Our family was amazing, and at a certain point, her sister actually moved in with us. Sure, it was a lot having my sister-in-law live with us, but it was incredibly helpful during recovery. Because if you’re not there, taking care of your loved one, someone else has to be there in case something goes wrong.That person also has to know what to do when something goes wrong, and without my sister-in-law sharing this burden, it would have been impossible for either of us to continue to balance our lives.
Cancer leaves scars on the caregiver, too, and they heal slowly.
Everyone asks me, “how did you get through that time in your life? How did you do it?” In all honesty, I don’t know, and I don’t think I got through it very well, and that’s okay. You do your best; you do everything and anything you can to get through it as best you can.
During Liya’s treatment, I decided to start seeing a therapist. It was a really dark time for me, and my anxiety became crippling. I was in cardiology fellowship and working long hours with incredibly sick patients. Therapy has been a vital part of my journey, and I still see a therapist to this day. I think it's important to recognize that an experience like the one Liya and I went through is traumatic, especially for young people. And even now, 2 years later, there are some elements of post traumatic stress. That’s the thing about cancer. It doesn’t just affect the individual; it affects the whole family. I think that’s true anytime someone gets sick, but with cancer, where there’s usually a long-term treatment plan with heavy side effects, and it can leave lasting emotional scars.
I cannot say that I’ve found my way fully out of the darkness, but I can now see the light breaking through. Before Liya got cancer, we would plan our weekends until perpetuity, making all these different plans far into the future. These days, it’s hard to think too far into the future, and the plus side of that is that we are living in (and reacting to) the present. When you go through something traumatic, multiple times in a row, you start to shift focus to short-term goals and learn to live in the moment with those you love the most. Without our family, friends, and some truly amazing doctors and nurses, there would have been no chance of finding my way through this storm, but as with all caregivers, every day we take steps forward out of the darkness.
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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