A medical researcher learns patients’ feelings first hand

By Miri Horwich-Fried

PETACH TIKVAH, Israel–Doing for others was my game plan. About four years ago, at age 33, I completed my doctoral work on diabetes. A resident of Petach Tivkah and mother of three, I sought a new direction. By “chance,” I heard about a lab researching cancer immunology, headed by Dr. Cyril Cohen, which had opened at Bar-IlanUniversity and was looking for researchers. This subject always interested me. Not only had my father died from the illness, it also struck many people in my circles. It is such a common disease today, and they still have not found a cure. So many studies have been done on the subject, but the treatments remained the basically the same ones they have been using for many years. This dissonance led me to feel that it was a mission, a calling, that this is an area where I can make a breakthrough.

The pioneering research I was working on, which was not yet implemented clinically in Israel, attempts to use the existing immunological system, through genetic engineering techniques, and to get that system to attack the cancerous cells in the body.

I worked feverishly. So many people were suffering. Ensconced in my ‘safe house’ of good health, I reached out emotionally, trying to empathize with  families who were facing death.  I understood what it meant to be in denial…intellectually. I could comprehend the terrifying fear of facing a non-future…intellectually. I said ‘I understand.’ to those others but I understood… only intellectually.

And then one day, the ‘others’ became me. And I became the ‘others’.

Three years after I began my work, Isuddenly began to experience sharp stomach pains.  When I went for tests the first time, the doctors thought that the pain was connected to the fact that I was post-partum. Nobody imagined then that it could somehow be connected to cancer. But the pains did not go away. All the tests I did came out normal. Finally, they decided to send me for an ultra-sound, where they discovered that I had a lump in the liver. But even then, they did not understand what it was all about. They thought it was a problem with my veins and told me to come back for a check-up in six months.

During this entire time, I continued to suffer from periodic attacks of stomach pains. They were like contractions. They came and went in waves, but when they came – the pains were unbearable. I never experienced such sensations. Despite all this, I did not attribute any importance to it. I never dreamed that it could be a chronic illness. After a half year, the doctors saw that the lump was growing and finally sent me for a CT, MRI and a biopsy. Only after all these tests did it finally emerge that we were talking about a malignant metastasis that had spread from its source in the intestine.

The disease was diagnosed at a late point, when the cancerous growth was already in an advanced stage, but I’m not pointing a finger at anyone. I’m not blaming the doctors. True, there was a comedy of errors, and if it could have been avoided, we might have discovered the problem earlier – but it is also my fault for not regarding the problem as very significant. After all, you wouldn’t imagine in your wildest dreams that a disease which statistically attacks people over age 50 – will get to you too.

Even before I was summoned by my family doctor for an urgent discussion, I already knew. Three years in the cancer research laboratory prepared me for this moment. I remember that day one minute at a time. When I saw the face of the doctor who did my biopsy, I had a feeling that it was cancer. But still, even though the doctor tried to soften the blow – it was a big shock. My husband and I wanted so much to believe that it was all a mistake.

But reality proved otherwise. I was diagnosed with intestinal cancer, and for the second time, my family was forced to cope with the deadly disease. My father died of pancreatic cancer nine years ago when he was just 52 years old. So the first thing I asked myself was, ‘Why is this falling on me for the second time? What did I do to deserve it?’ The hardest thing was telling my mother, after she went through the whole saga of treatments with my father. I didn’t want to tell her until the diagnosis was definite. In general, I didn’t want to talk about it with people. I didn’t want to hear about patients that recovered or about side effects – As far as I was concerned, I decided that it did not exist. It won’t happen to me, and I will go on as usual. As soon as I exited from the discussion with the doctor, I made up my mind, with my family’s support, to keep on going.

That same day, I went back to work and picked up where I left off, as if nothing had happened.

The transition from caregiver to care recipient was not easy for me. I’m not used to being in this position. Until that moment, I read up on studies and articles and related to cancer like a research subject.  Suddenly the academic subject came home with me. I read statistics and dry facts like: ‘Treatment is successful for 20% of the patients,’ and suddenly, when it happened to me, I understood that it is not just numbers. Behind every statistic like this stands a person, a family, an entire world. Everything became much more tangible.

Even after the chemotherapy treatments which I took every two weeks, I continued going to work regularly. After every such treatment, I had to be connected for 48 hours to an infuser (a small pump for infusion that drips the chemotherapy medications directly into the vein at a steady rate – DE). I would go to work with it and conceal it under long shirts. At the lab, they regarded me as half hero – half insane. They would ask me what I am doing here the day after treatment – but I didn’t want any pity. I viewed it simply as a period of time I had to get through, and that was  it. To my good fortune, my hair did not fall out. I so much did not want to have this side effect, which is so identified with cancer patients. I did not want people around me to know. I wanted, at least on the outside, to appear normal, in the hope that this would impact my inner feeling as well and I would believe that I was healthy.

Did I feel I was succeeding in functioning normally?

Look, I won’t claim that there weren’t days when I broke down and felt miserable. Sometimes I was present in the lab only physically. Emotionally, I was on a different planet and my concentration was spotty. I experienced nausea and vomiting and was kind of in a fog – as if I was simultaneously there and not there. It was a horrible sense of helplessness and of loss of control over my own body. But I always maintained hope and high morale. I really believed that everything would turn out all right—the opposite was unthinkable—and, in spite of the side effects – the work gave me a reason to get up in the morning.

But it wasn’t working. Not really. I couldn’t manage to run my life they way I had been but I am not someone who is used to accepting help. I did not easily relent. It took me a long time before I  turned for help. I like it when everything is under control and the way I saw it, if I have to ask for help, that means that I cannot cope alone. After concerted persuasion by my husband, together with my children we began coming toEzer Mizion’s Oranit, at first with great hesitation. Today the whole family already considers Oranit our second home. On days when I did not feel good, the children would go there to play with other children like them. They thought it was a club, like any other. They did not understand that it was because of their mother’s illness. This was the first time they felt they did not have to be self-conscious their mother’s illness – because everyone there is in the same boat.

Last July, I underwent a successful operation to remove the right lobe of my liver, removing the cancerous growth and its metastatic extensions from my body. Since then, I have been convalescing and undergoing periodic tests. Right now, everything is okay. I can say that I am in remission, and I hope that it will continue that way.  But full recovery is measured in years, not in a few months. This is not the end of the story yet, but today I know to appreciate life more and to make the most of every minute.

Like most people, I could not fully understand until I was on the other side. My admiration for theEzer Mizionstaff grew by leaps and bounds as I and my family benefited from Oranit’s many programs. Their professionalism detracted not one iota from the deep warmth emanating from each staff member. Nothing superficial or intellectual about their compassion. Their caring enveloped me and all who frequented the ‘club’ like a mother’s hug.  They really did understand.

 I did some hard thinking and asked myself, ‘How can I use what I went through for the benefit of others?’ The answer was clear: I went back to work with a lot of motivation. It’s not just a matter of publishing some more articles. It is the aspiration to create a real tool that can help cancer patients. Not ‘others’ but real people, people like me, people with families and neighbors and friends. People who are scared.

Mothers with small children who cannot fathom leaving their children to be brought up by other people. Young teens who cannot make plans for the future because there may not be a future. Toddlers whose mothers do not buy them end-of-season clothing on sale for the next year but don’t allow themselves to think of the reason why. Now I understand with the depth of my very being. I go to work every day with one thought in mind: to help discover a cure for those others because now I am one with them.

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Horwich-Fried’s story was distributed by Ezer Mizion