Caregivers

Kevin

Kevin, a doctor, was devastated when his wife, Donna, was diagnosed with stage 3 lung cancer. He knew to anticipate a short horizon, but not the anger, frustration and guilt.

Donna had a persistent cough for at least four months before she was diagnosed. I had sent her to an internist who prescribed cough medicine and didn’t take the symptoms seriously. After a couple of months of this dry hacking, I insisted he do a chest x-ray. Donna’s mother had died of lung cancer at age 57, so I knew we couldn’t take this lightly. When it came back normal, I asked for a CT scan. The doctor said I was being a worry wart but acquiesced. When the scan revealed a mass in right upper lobe of her lung, I was astonished. Even though I had worried and had pushed for the test, I didn’t expect them to find anything. It was worry alternating with denial, or worry and denial existing side-by-side, and I was never entirely sure how to balance the two.

It was weird trying to juggle being a doctor with being her husband and caregiver. I was frustrated, angry and guilty all at the same time. As a doctor, I didn’t like the hacking quality of her cough. But as a husband, I was reassured by an internist that I trusted, and wanted to believe that she was healthy. When the scan came back positive, I felt guilty that I didn’t push hard enough. I remember saying to Donna that it could be TB or some type of infectious disease, not necessarily cancer. But I had a bad feeling, given what had happened to her mom, that Donna may be facing that same inevitability.

Confronting the Diagnosis

Next, she had a PET CT. I remember being terrified before the test, knowing that the results would be definitive. The test showed tumors near her heart, in the mediastinum and in the upper lobe of her lung, and it seemed pretty clear it would turn out to be cancer. She was scheduled for a biopsy.

We were getting ready for a trip and I needed a new passport photo, so after the biopsy, I went to get a picture taken.  Just as I they were taking the picture, the doctor who had done the biopsy, a friend, called my cell phone. He said, “The results are back. Would you like to know now or would you prefer to come in and discuss it.” But his question already told me the answer. It was lung cancer. The passport picture, which I still have, shows my intense feelings of grief. There could be no more denial. Donna had stage 3 adenocarcinoma of the lung and it carried a very high mortality rate.

She was next door getting a manicure. I went to her and told her the biopsy was positive for cancer. I sobbed uncontrollably the whole way home. She didn’t shed a tear and told me it was going to be okay, but I knew that wasn’t true.  I did not know how the meaning of okay would change over the course of her illness. For whatever reason, maybe because I’m a little older and a man, maybe because she took such good care of herself, I always assumed I was going to pre-decease her. That day, I confronted the opposite. Clearly, she was going to predecease me.

Believing in Magic

In the early days, Donna never cried. She never wanted to know her prognosis or what the diagnosis really meant. But, when we told the kids, our daughter had already completed enough medical school to understand. And our son got it immediately. It was hard on them from the very first moment, but made easier by who our children are. Giving and receiving support are very much one in the same in this situation.

I relied on my medical connections to find the very best thoracic oncologist and surgeon. The plan was to shrink the tumor with chemo first, then resect the tumors from the upper lobe and mediastinum, in the hopes that it would allow for a long-term remission. I had been told the surgeon was a magician, and that was great. We needed a little magic and I wanted to believe in magic.

It was a constant struggle between hope and fear. Donna developed superior vena cava syndrome—when a tumor presses or invades the major veins that drain the head—almost immediately after getting a port placed. I could tell from the swelling in her face. That was devastating because it made her looks so sick for the first time. It turned out that the placement of her port coupled with the location of the tumor caused the problem. We had to move her port to other side but then she finally started getting chemo.

More Devastating News

I was hopeful she would respond well enough to be a candidate for surgery.  She had multiple rounds of chemo that knocked the shit out of her. All the usual side effects—vomiting, loss of appetite, feeling like she was run over by truck, inability to move, hair falling out. But throughout it, she didn’t want me to see her bald. She would sleep with a cap on, and other than the one night the cap fell off, I never saw her bald. Eventually, we learned that the tumors were not going to shrink.  

Around the same time, she had an episode of visual disturbances. I talked to her doctors and suggested we do an MRI of her head to look for brain metastases. They ordered an MRI of the brain. When Donna signed onto the hospital web portal we learned that she had 5 brain metastases (mets). One can be removed surgically, but five? The average survival time with brain mets is three months. (We were lucky—she survived another year.)

That news was completely devastating. Donna always wanted to hope for the best, not thinking about how much time she had left, so she stayed upbeat, but I knew where we were headed. By the time the brain mets were discovered, I already knew surgery wasn’t in the cards. It was this constant, iterative process of bargaining, where what you hope for changes and changes and changes again. It’s an ongoing process of renegotiating with the impossible.

In the early days, we hoped that the chemo would work and in combination with the surgery, she would have long term remission. Then we hoped that brain radiation would shrink her mets and preserve her mental function.  Then we hoped that a new chemo would give her a good long time.

Adjusting Hopes

Later, after a long hospitalization, I had to adjust my hopes downward again. Donna was having multiple blood clots traveling to her lungs making her short of breath and critically dropping her blood oxygen levels. She was in the hospital for nearly a month, and I was sleeping in the hospital with her. It was tough. She was hallucinating, seeing visions of her late mother and father, talking to our recently-deceased dog. She couldn’t walk and periodically the oxygen in her blood would drop; I didn’t think she was going to live to leave the hospital. 

At one point, I had spent 6-7 consecutive nights in the hospital, getting loopy from sleep deprivation and fear and grief. Her sister was with me and I said to her sister, “I don’t even know what to pray for any more.” She wisely said, “Pray for as many good days as possible, and as few bad days as possible.” 

They put in a filter to catch any clots before they could get to her lungs, and she lived to leave the hospital. She got well enough that we would eat dinner together and go on beach walks. And for a time, it seemed like we could all take a deep breath. But two months later, she needed to be on oxygen. There was one day, a month or so into oxygen, when we were walking around a market somewhere and she took the oxygen off. She was just trying to live for a little while without being a cancer patient, without needing her oxygen. I was always trying to protect her, and she was just trying to live.

To Live a Little

People who go into medicine find the caretaking role pretty easy. Being a doctor is caretaking. But it’s different helping a spouse get to the bathroom and manage pain. Still, the caretaking aspects of it didn’t feel hard. I was happy to have something positive I could do to make it easier and more comfortable for Donna. Long ago, after knee surgery, I was cranky when I was in pain. But Donna was stoic, remarkably emotionally disciplined. For the most part, she didn’t cry, didn’t express fear, and wasn’t cranky. When we were having a day in the house together, she would often say that she felt like luckiest person in the world. The biggest thing I did that annoyed her was trying to get her to eat. She was very thin, malnourished and really couldn’t eat, but I was pushing food.  

I also would make Donna promise not to go down the stairs alone because she was so weak. But she was determined, and actually took a couple of face plants. She didn’t break anything, which is really lucky because her bones were riddled with cancer and fragile. I’d try to get her to be safe, and she’d do everything she could to maintain her independence. It’s not that she disagreed with my judgement, she just wanted to do what she wanted to do, to live a little.

Donna remained grateful throughout her illness. She was grateful that we had the resources to get the best medical care, grateful that our kids, her sisters, our extended family and friends were so present for us and available to us and so supportive. I think part of her strength came from her gratitude and her gratitude in turn helped all of us to remain strong for her and for each other.   

A New Hope

This whole time, the PD-1 inhibiters and other immune therapies were just being approved for lung cancer. I became obsessed with getting her a PD-1 inhibitor. The hospital, one of the best cancer centers in the country, didn’t recommend it for her. But, I found an open label study at a different university hospital and transferred her care there. That become my next stage of bargaining. Just get her on the new therapy and maybe that will give her more time.

She was back in our local hospital and had a metastasis behind her eye that was making her eye bulge, and huge palpable lymph nodes just above her clavicle. The hospital pharmacists tried to block her from getting the new drugs, since they were being shipped from a different hospital. He was actually on the floor trying to keep Donna from getting the drug that I thought might save her life. I was so mad. But, once we got her on the new therapy, the visible bulges for tumor mets improved.  There were reported cases of people getting years of normal life with end-stage disease. I was hoping she would be a super responder, but that was not to be.

The Winter Inside

At that point, she also had mets in many bones and was in a lot of pain. She also couldn’t effectively advocate for herself. Controlling her pain was a real issue and, the hospital was not always attentive to her needs. When you reach that stage, the prospect of a good day disappears. Is it better to be in an opioid induced near coma, or alert but in agonizing pain?  All you can hope for is an easy passing. In the last weeks, her friends all came to visit and say goodbye. We were there when she drew her last breath—me, our kids, her sisters. Then she was gone, leaving a void in the world for so many of us.

We went home after that, and within 12 hours, the heat went off in the house. We had been so distracted and had missed an oil delivery. Now it was January and freezing. It felt appropriate that the winter outside became the winter inside, a metaphor for all that loss and grief.  

That time is a blur. But a good thing about ritual is it tells you what you have to do when, left to your own devices, you might do nothing. I had bought funeral plots a year before her death. A minister came to meet with me and the immediate family to talk about what we wanted to do. Because Donna was such a private person and didn’t like public displays of uncontrolled emotion, I wanted to remain composed through the service we held for her. Somehow, I was able to do that, but I have no idea how. Friends came out of nowhere. There were times life felt sort of normal, but other times when I felt it was impossible to do anything.

Sequential Compromise

I was really a complete wreck. At work, I had a major project I had to tackle and so many people were depending on me to do that, but I had been so focused on Donna and the kids and illness and getting through the day, and finding the miracle cure and managing her care and trying to figure out how to get drug shipped from Japan, etc. I didn’t know how I would get back to work. But human beings are astonishingly adaptable, and somehow the unbearable becomes the new normal, at least on an intermittent basis. What you hope and pray for shifts.

I had 18 months of knowing Donna had a terminal illness before she died. You try to prepare and you try not to. Preparing is giving up, not preparing leaves you intolerably vulnerable. When the doctor agreed to give her the PD-1 inhibitor, he described it as a “Hail Mary pass” and I was furious. He was directly confronting my denial. There’s this incredible balance between what you fear, and what you hope for.

The hardest part was the sequential giving up of various hopes—that it’s not cancer, that surgery and long-term remission is possible, that she’ll have a lot of good days, that she won’t suffer too much. It was a war of sequential compromise, bargains made, lost, remade and, ultimately, the recognition that reprieve is impossible. There could be no reprieve. This illness was a death sentence and the inevitable was coming, came, and has passed.

Not Really Gone

I’m not sure where the strength came from to get through it all. Donna and I have two wonderful kids who were a huge source of comfort to us both. And Donna herself was astonishingly strong. It was her body that was being ravaged by devastating disease not mine, and yet I got strength from her. And from within myself for our kids, and from our remarkable network of extended family and friends. I really tried to be there for our kids, and for her sisters. Donna did what she had to do. So I had to do what I could to get her the best possible care, to keep looking for solutions, to keep her comfortable and prolong her life. It didn’t feel like being strong. It felt like walking an inevitable path, one foot in front of the other, while trying to find the best path to walk.

Even after her death, she was gone but not gone. There is biological continuity reflected by the kids and grandkids. And emotional continuity because many of our personal relationships are still here. And a part of her lives in all of us. Having a grandchild with her name is a huge comfort—it’s continuity, and also sudden change. The human experience is a mix of those things. 

We had 18 months, which for a stage 3 lung cancer with brain mets, meant she greatly outlived her prognosis. And she was always remarkably good at sucking the marrow out of each day. On some level, the scary thing is that all of us take that journey. None of us is immortal.  When her mom died of lung cancer at age 58, I remember thinking, “She’s so young.” Throughout Donna’s illness, I had the same thought, “She’s so young.”

Emotional Desperation

In the wake of Donna’s death, I wrote a lot and that was helpful. I don’t like feeling sad—I like feeling positive and productive. The thing about the stages of grief and loss is that they are not sequential. On any given day, I could feel like I was in an endless winter, and that spring was coming. You never really get over loss, it’s more like loss and joy are parts of the same landscape. And all of us can, at any moment, move to a different part of the landscape. 

In my eagerness to resume my life, two months after Donna died, I started interviewing for a job that I would have hated, the type of job that I had avoided for years because it would have taken me away from what I really like to do. But I felt I had to start a new life, just change things. Also, I met and dated some people who were not right for me.  I was in a state of emotional desperation and was trying on a bunch of things that were not a good fit.  Despite doing all the right things: going to a support group, talking to a therapist, doing yoga, I was not feeling right. 

Loving Connections

I ended up getting very sick and was in the hospital for a couple of weeks. Apparently, many people get sick after big losses. Eventually, I got to a place where, once again, I was open to loving another woman.

The only way to live is through loving connections. I couldn’t make a choice to close myself off as I have seen others do. The real issue is that this human landscape, at every moment, is filled with glorious and devastating possibilities. We have some choices, but less control than we would like to think. It’s the rule of the human condition that on occasion we must endure devastating change. We can live in denial, or deal with what comes, setting it aside enough to savor the good moments. I think it’s better to savor the good moments while you can. There is life after cancer, although it can be hard to imagine it when you are in the middle of it all.

 

 

 

 

We'd love to hear what you think!