Amy’s husband of 46 years was diagnosed with stage 4 melanoma in 2018. Despite the support of family and friends, she struggled with the uncertainty of the diagnosis and the emotional rabbit hole.
It was devastating at first when Eliot was diagnosed. It was so out of the blue. He had no symptoms, he wasn’t sick. It was just the doctor’s good sense to do the chest x-ray that led to the diagnosis. That first call from the primary care doctor, when he said, “Sit down, we found several tumors in your lungs,” that was really alarming,
My husband is my rock, so it really threw me. We were in the same space of pain and daze when we heard that news. Immediately, I assumed he would die. They were thinking it was lung cancer, and lung cancer is a death sentence. What would I do without him?
A good friend of ours, a pulmonary radiologist, said it didn’t look like lung cancer. That was our first indication of hope. He suggested we go to Memorial Sloan Kettering. I called. They had an appointment the next day, so we went. My husband got energized. He got all his reports, his medical records, and we took everything to Sloan. There were all those tests, and so much to do. It was all so overwhelming. The doctors there said there is hope here, so we were not going to fall down a rabbit hole, not going to get into what ifs. Turns out it wasn’t lung cancer. It was melanoma stage 4, with tumors in the lungs, adrenal glands and on the spine.
This Is Life
The first couple of weeks we were really on edge, every minute. We went through it all as if we were in a coma. It was pretty tortuous. It’s worse when you don’t know. Once you know, once you have an action plan, it’s a little easier to stop the vortex and keep yourself from going down the rabbit hole. In the beginning, we were going to MSK so frequently, getting scans, seeing doctors, that cancer was at the very forefront of my mind. If he had a headache it panicked me. But my husband helped me to stay calm. Once things had settled down, it got to the point where had to remind myself that he has cancer. When it was a good day, I would say, “You feel good, let’s do something. This is life, let’s live it.” So, we kept each other up.
I was very vigilant about his health. Everything that happened, I had to think, was it the disease? Was it the treatment? He would get tired, so I worried it was the medication. I reminded him his body was fighting an enormous disease. But it was tricky. I didn’t want to be intrusive. Should I go with him to all his doctor appointments or let him go on his own? I think of more questions than he does. He is so accepting. But I had to give him some space.
After all the years we have been together, I have an emotional synergy with my husband. We each could get depressed and anxious. But, it would bounce back and forth between us. If one of us was down, the other would take the supportive roll and try to regain optimism. He was more prone to go down the rabbit hole than I was. But the first time death hits you in the face, you know it is real. Even now, I could get depressed, but I try not to go there. We are pretty open with each other about our emotions, and that really helps.
Our daughters were both with us for the initial visit at MSK. Our older daughter is a doctor. It felt so much better that she would know something about what the doctor was saying. She could ask questions we didn’t think to ask and explain things to us later. Our younger daughter went with her dad for all of his tests. She kept him laughing, reading cartoons to him, and keeping him distracted. She was a great support and gave me a bit of a break. But then we would all sit together and worry.
Thank goodness we had friends. You learn a lot about people in a crisis like this. Who are the ones who will be there for you? Some you assume will be, can’t. Others come out of the woodwork and give in ways that can be surprising. And people have different levels of giving. You also learn how much a phone call, or a card means. They all give you the sense that you are not alone in this. It helps you see things you never realized before in your life. It changed me. Now I understand how important it is to reach out when someone else is going through something like this.
I’m a therapist and I am trained at absorbing other people’s toxicity and problems. But it is hard. I don’t know if I want to do it any more, after absorbing all that we have been through. I don’t need any more negative energy. I still think about how I would manage if Eliot dies. That would be so hard. As a therapist, I am familiar with the role of giving and helping others. I was dealing with everyone else’s stuff all the time. I could take care of someone else but taking care of myself was harder. The kids encouraged me to do something for myself every day. But I had to push myself to go to the theater alone, to do things on my own, to care for myself. I felt I had to practice.
Living with Uncertainty
So few people ask a caregiver, “How are you doing? What can I do for you?” The focus is, naturally, on the patient. But caregivers go through a lot too. So you have to ask “Can you do this for me?” Friends are happy to pitch in if you tell them “I need help” or “Would you please…” People want to give, but it can be hard for them to know what you need. They don’t understand.
Every time you go for a test or a scan, it’s hard not to be in a panic. Living in this uncertainty is so challenging—when you don’t know if the cancer is there or gone, it’s momentarily so hard. The tumors have shrunk to 15% of their original size, but they’re not gone. The melanoma will always be in his blood. What if it comes back? I meditate and try other ways to reduce negative energy, which helps, but it’s hard. And we don’t talk about people who didn’t thrive on the treatment. I am very protective of his mood.
Cancer is like a club you don’t want to be in. But you have to accept it. I take one day at a time, try to appreciate the good when we have it. Generally, in life, we all tend to remember the negatives more easily, so you really have to focus on the positives. Do things that make you feel good. Step away from the things that aggravate you. I know that, intellectually. But it’s hard to do.