When the cancer scientist's husband got cancer

Relief. This was what overwhelmed Karen Husby when she first had her worst fears confirmed.

Her husband had discovered a bulge in his leg after a bike ride and thought that it was a pulled muscle. But when Karen Husby looked closely at it, it dawned upon her: This is a sarcoma. It is a rare and serious form of cancer.

She knew a bit about this disease. As she herself is a cancer researcher and PhD student at the University of Copenhagen, and because she had a friend who died of a sarcoma a few years prior.

Several weeks went by with Karen Husby and her husband in and out of hospitals and him being put through all sorts of examinations. Some mornings she just could not hold back the tears when she left her apartment in Østerbro and biked towards her office.

She had to explain to her two boys, one and three years old at the time, that mummy was upset because she didn’t know why daddy had a swelling in his leg.

»It was really tough and I was in a dark place. This … damn, I will be a single mum, alone with two children. I am going to lose my husband, what am I to do, what should I do?«

31-year-old Karen Husby works with cancer in her daily work at the University of Copenhagen and at Herlev Hospital, where she does research on gynaecological cancer and prolapses of the uterus.

Now she feared that the illness she spent her working life trying to understand had found a home inside her husband. That he would become the kind of statistic that she herself is absorbed in when she carries out her research. And it abruptly changed her life.

She now looked down at the tiniest grooves in the hospital corridor floor that used to just bring her to the canteen, as she clung to her husband on the way to tests.

And when she biked home from work, she thought: Everything is different inside me, and yet the trees are still standing in the parks, the cars still drive on the roads, and people are talking and laughing on the sidewalks. Everything and everyone is just living on as if nothing had happened. Why?

»The worst thing was all this uncertainty,« she says.

»I remember sitting on the couch, just clinging to my husband. Thinking: If I just cling to you, you won’t disappear. It was a freaky explosion of emotion.«

In this state, it could suddenly be a relief to get the worst possible answer. Because, at least, it was an answer.

It was on her husband’s 30th birthday. They were able to read something about cell divisions, a lot of scientific terminology that seemed innocuous until their eyes slid down to the bottom of the document and found the verdict: Cancer. The protrusion in his leg was a sarcoma.

»The hope that this protrusion was benign disappeared, but now at least we knew what it was. The uncertainty was gone. I had used so much energy making a fuss saying, ‘things are really bad, you have to hurry!’ Now all of a sudden, we knew it was cancer, and all the doctors knew that they had to hurry up. You could take action. Something could happen.«

Can I live without my husband?

With this diagnosis, gloomy questions reared up in Karen Husby’s mind: Could my children manage without their father? Can I live without my husband? Would my life have been better if I had married someone else?

She describes this in the the essay Corona, Cancer and Love, which the University of Copenhagen has awarded with a PhD Award and DKK 18,000. A prize that is awarded by the deans at the university and goes to »the most excellent text by a PhD student at UCPH«.

She also answers these questions in the essay. And the answers are more hopeful than you might think.

She has not lost her husband. Not even when he started getting chemotherapy, and at times was so lethargic that it was physically impossible for him to do anything but lie down.

»In reality, not focussing on my career was probably not so bad for my career.«

PhD student Karen Husby

She has no regrets that she chose to share her life with him. Quite the contrary.

»We often go around saying to each other: ‘When I have to go through all this, it’s nice that it’s with you, at least.’ He says that, and I say that. I would not be able to be a part of this with him if I had married someone else,« says Karen Husby.

»It is confirmed to us how good we are together, that we can be a team that solves the challenges. There are all kinds of challenges in life for loads of people that you have to solve. It can be difficult to get children, take care of children, find work — a thousand things. Now we’re in a situation that’s really difficult, but we can do it together.«

Karen Husby recalls herself the morning when she was told that her grandmother had died while she was on her way to the hospital. It was not a shock, it would have been a question of weeks anyway. But as she stepped into her husband’s room at the hospital, she broke down.

From the bed her husband looked at her and said, »Pass me the crutches so I can get up and give you a proper hug?« Then they stood there for a long time and held each other in the hospital room.

Railway lines on the floor

At home, life has changed as well.

It is as if the small irritations of daily life – trouble at work, negotiations about cleaning, the traffic – are all dissolved in the cancer process. Not even the coronavirus lockdowns and restrictions have been at the top of their minds.

Meanwhile, they found beauty in small things.

When they bought some coffees-to-go at the local cafe and let the boys wander around Svanemøllen beach with a kite hovering over their little heads.

When the whole family set up railway tracks on the living room floor, with the laptops shut and forgotten somewhere.

When they read the kids story ‘Cykelmyggen Egon’ in the hospital bed.

And when the dad, struck down with cancer, spent his energy playing hockey with his sons, a hockey stick in one hand, a crutch in the other.

»All this is not because of the disease, but it has strengthened the feeling that we are fortunate to have each other,« says Karen Husby.

»The fact that he plays hockey with his sons becomes more of a big thing than if he was just playing under normal circumstances. It would have been nice, but now you’re thinking, ‘it’s crazy that he is able to stand there with that hockey stick, and that he is using his energy on them and on us’. This is big.«

»I’m also grateful that we’ve had children. It would have been so much worse if I had to fear losing my husband and the hope of starting a family with him. I have his children. He is the father of them – he has already been the father of them.«

The children are well aware that their father has cancer.

As soon as Karen Husby could not hold back her tears in the apartment, their parents started talking to them about the disease in as simple a way as possible. »Now we have to go to the doctor and find out why the lump is there,« they said trembling.

When he got the diagnosis, they saw an episode of something called ‘teddy doctor’ on the kids TV channel DR Ramasjang with their children. Ninus, a teddy rabbit, is given chemotherapy because he has cancer in his leg.

»Does he have cancer? This is really interesting. I know everything about cancer,« says an excited doctor in the programme before he explains to a young lad what happens when a teddy bear gets cancer.

It seems like Karen Husby’s eldest son has understood what is wrong with Ninus – and his father. He certainly goes round the yard explaining to the other children what a cancerous tumour is.

»We try to make it something that you are OK with talking about, something accessible,« says Karen Husby.

She has not told her children yet, however, that a sarcoma can be a threat to your life. And that her friend, who died of cancer, had the same disease as their father.

Research as a free space

It is not necessarily an advantage to know everything. Or just a lot.

As a cancer researcher with a husband that has cancer, Karen Husby knows this all too well. When the doctors explained what he had to go through, she knew what could go wrong. When he got a blood transfusion, she knew about the rare cases where patients had severe side effects.

Her research work has been a free space for her in recent months.

»It’s the coolest thing to be able to go to work. After two weeks at the hospital with my husband, I was looking forward to taking the bike to the office. I also worked from the room where my husband was in hospital. The work became my window to normality.«

»We make it something that you are OK talking about, something accessible.«

PhD student Karen Husby

She does research on gynaecological cancer and has never worked with this specific type of cancer that afflicted her husband. Maybe that’s why she managed to keep her private and professional lives separate and not see her husband as a statistic.

»But,« she says, »I can feel when I go down into the details, like for example the stages of cancer, I think — wait a minute, stage four, this is bad. I wonder which stage my husband’s cancer is? Or when I read about the spread of tumours I think: Can I be sure my husband’s cancer has not spread? Then I think quickly: Don’t even think about it. We have not heard anything about this from the doctors.«

Her husband was recently given a knee prosthesis. This means that he is unable to go for long walks, play football, or play with his boys. Karen Husby talks about developing a new and better prosthesis that could extend the distances that her husband can manage.

»But maybe I need to keep away from all that.«

Why?

»There are other people who know more about this. I have to focus on what I can do.«

»Research is a lot about personal commitment. But it’s not gut feelings. I don’t think I would be able to keep a distance to my research if it was about my husband. I don’t think that would lead to good research.«

An unequal struggle

You often say you fight against cancer. This is what Karen Husby does in the sense that she dresses up in a lab coat, clogs, and puts on scientists’ glasses.

But that’s not what she feels when she and her husband are at home.

»It turns you into a loser if you don’t win over the cancer. This struggle is totally unfair. No-one fights a heart or lung disease. Why cancer?«

What Karen Husby and her husband, who is also a medical doctor, rely on, is science.

She is grateful that some researchers have just published a study about how to best treat exactly the same type of sarcoma that her husband is afflicted with. It is a kind of knowledge that benefits people, in this case the person closest to her. And this motivates Karen Husby to do research.

»Some of the research I’ve done has led to a change in the procedures, and it’s great to know that there are women in the world who get better treatment because of something that I’ve worked with. I thought this before my husband got cancer. But that feeling has only been strengthened, now that I’ve tried being on the other side. It is confirmation of how important science is.«

She previously aimed at specific goals in her research career. She reckoned she should just pull herself together and accept the inevitable frustrations on the path towards what she saw as the ideal destination in her working life.

This has also changed during her husband’s illness. She works more efficiently, and she does not spend time on these frustrations.

»Yes, it’s a shame that you have to wait a long time for this data, but you can’t spend your life being annoyed about waiting. So you have to do something else in the meantime.«

»When you don’t spend time being frustrated, you just go further with the other things. In reality, not focusing on my career was probably not so bad for my career.«

If she has a goal in life now, it’s quite simple: to feel good.

»I can work really intensely for a week, say for an exam or for a PhD submission. But to do something to get to another place, I don’t do this anymore.«

»I really believe that if you do what you think is fun now, it will also lead you to something that you find fun.«

The summer was without travelling for Karen Husby and her husband. The calendar is full of meetings with doctors, her ‘e-Boks’, for messages from public authorities, is filled to the brim with letters from Copenhagen’s hospitals, and the remaining summer holiday plans were shelved after a round of chemotherapy was postponed due to an infection.

But even chemo time is full of walks with her friends that seem more important than ever, hugs that feel warmer, moments that will never disappear.

Or as Karen Husby writes in her essay:

»A feeling of joy in the middle of all the misery.«