Kolja is 28, freshly separated and tinkering with a new beginning, new apartment and new job… but there is a hardening in his left testicle. And now he has to make existential decisions for himself and his life.
1. The diagnosis
I’m lying in the treatment room of a urology practice with my pants down. The doctor scans my testicles and then makes a sonar scan. She stays suspiciously in one place for a long time with the sensor, then takes a photo of the spot; a standard examination. Maybe an infection – I thought. I chose the practice because it is near to IKEA and I still need stuff for the new apartment. The urologist puts the ultrasound sensor aside. The image on top of the monitor freezes. She says to me that she needs to get her colleague so he can also have a look. She leaves me alone in the room.
“The doctor grabs me under my arm and asks me if I intend to have children.”
It is a small room. Maybe nine square meters. Typical Berlin Altbau style: wooden floors, folding doors, high ceiling and only the couch and the ultrasound device inside. And I stare at it – I can’t look away. It’s a sonar image of my testicle. At the top, where the seminal duct begins, where this hard spot is, there is a large black spot like a black egg in an egg; a kinder surprise egg… only it’s evil. The doctor comes back with her colleague. He then feels my testicle again, looks at the screen and the two look at each other seriously. And then he says: Yes, I’m pretty sure it’s a carcinoma.
Now I can’t hear anything else. The blood rushes in my ears. Testicular cancer. I feel dizzy. When I try to get up my legs give way. The doctor grabs me under my arm and asks me if I intend to have children. And I answer honestly: Yes, I have wanted to for years. But now my ex-girlfriend and I have broken up and I have a tumor in my scrotum.
2. The hot dog
IKEA is the perfect world. It is always friendly and it never changes. You don’t have to think about anything except consumption. If you have found something nice, there is always a shopping basket right next to it, right next to the lamp or wall mount of your choice. There is even a shortcut so I don’t have to go through the children’s department. After I’ve got everything I need together, I buy a hot dog, because that’s what you do at IKEA. When I want to pay for the hot dog, the guy at the cashier congratulates me.
And I say, “Why congratulations?”
He’s pointing at the counter. There lies the ultrasound image. It must have fallen out of my wallet. The picture with a testicular carcinoma on it and he thinks I’m going to be a father. I only briefly answer: “It’s a mistake.” I go out to the parking lot with the hot dog and cry.
3. The first shock
My father is a doctor. He says: “Testicular cancer – it’s not a death sentence. But don’t google it now, you’ll only find horror stories on the net.” He makes me a checklist: step one: get another opinion, step two: make an appointment for surgery, and step three: make sure to freeze your semen first. If I had to pay for it myself he would also support me financially. I feel much better after calling my father. His empathetic pragmatism calms me down. His checklist helps against the chaos in my head.
I have another urologist look at the ultrasound image. He is also sure. I have testicular cancer. There is no way around an operation. The earliest appointment I can get in Berlin is in four weeks.
Four weeks are quite long if you can’t think of anything else than how a tumor is growing in your genitals.
So I research further and ask my parents, friends, acquaintances for tips where I could still do the surgery. The choice then fell on the Bundeswehr (German Armed Forces) hospital in Hamburg. I get an appointment at least one week earlier, already at the end of October.
4. In the hospital: part of a risk group
The atmosphere there is a bit like a barracks. On the walls there are German flags and portraits of soldiers. Instead of “Oberarzt” (senior physician) there is “Oberst-Arzt” (colonel physician) on the door signs. The tone is short and strict. But the people here are specialists because soldiers are exactly the risk group in which testicular cancer most frequently occurs: young men between 20 and 40.
When I lie there the next morning waiting for the anesthesia to take effect, I don’t know if I’ll wake up with one testicle or none at all. That’s for the doctors to decide during the surgery. To do this, they first make a so-called frozen section. That means they cut the scrotum open and cut a small piece out of the other healthy testicle. The sample then goes to the pathology department. Meanwhile, the doctors remove my infected testicles. But they cut me relatively high up, in the groin area. That’s where the sperm duct begins. They clamp my skin and pull out the testicle. A single testicle can still supply the body sufficiently with sex hormones, and in most cases one is still able to reproduce. However, if the other is also affected, it is removed in the same operation.
When I wake up, I’m pretty stoned from the narcotics. Around me is my family. But I see them as if they were a blurred statue. I don’t really understand what they are saying, I’m half asleep. Only a few hours later I notice how painful every movement is – getting up is out of the question. When they leave and I am finally alone, I go to feel for it. Luckily, the other testicle is still there; it was not affected.
5. The pain after the surgery
Three days I’m in the hospital. I get a visit from my good friend Joel. He went to Hamburg especially for me.
Joel and I stay with my brother. Both of them take care of me a lot during that time. I can hardly move. Everything hurts: getting up, lying down, walking, laughing. As things get better I drive back to Berlin. The pain decreases and something else takes its place: the uncertainty. Two weeks after the operation a letter comes from the Bundeswehr hospital with the results. The tumor is not a seminoma – the most common and harmless tumor variant – but a mixed tumor with embryonic carcinoma.
If I had had a seminoma, everything would be done now; I would go regularly to follow-up cancer care and that would be that.
With my cancer, however, the situation is not quite so clear. My cancer is more likely to spread and metastasize elsewhere in the body – in the lungs for example. This thought unsettles me. I call the Bundeswehr hospital again. The Oberstarzt then tells me that I have a good chance of recovery – about 85-90% – that there are no metastases. He recommends an active surveillance, a close network of follow-up examinations. My urologist, who discovered the cancer, says that if I do chemotherapy now I can reduce the risk of recurrence to 2-5 %. I run from doctor to doctor. I look up specialists in Berlin who are familiar with both testicular diseases and cancer only to become more insecure. Ask five doctors and you will get five opinions.
Nothing is over!
t’s mid-November. Six weeks ago I got the cancer diagnosis. Of course that made me shit-scared. But after that it was somehow clear what I had to do: get a second opinion, freeze sperm and make an appointment for surgery. So far I’ve been thinking the whole time: I just have to get the surgery behind me, then it’s all over. Now I know: nothing is over. Maybe at this moment so-called mini-metastases are racing through my body. Tumor cells that are so small that you can’t even recognize them on a CT scan, that are looking for a new place where they can spread. Maybe not. You can’t know. I call my father again and hope that he can help me. But he doesn’t have a checklist for me for chemo. He can’t tell me if I should do it or not. He is a surgeon, not an urologist nor an oncologist.
6. Panic and self-help
And then something like despair sets in. I’m starting to do what my father advised me not to do at the beginning: google my cancer. The doctors’ rhetoric doesn’t help; they don’t know what it’s like to have testicular cancer. I need to know how the others are doing who are in my situation and face the same decisions. I come across some forums on the Internet. Young men who are desperate, who throw around thousands of foreign words from their doctor’s letters, who make wild calculations about chances of relapse and survival.
Others tell horror stories of how for 14 years they thought they were cured and then the cancer came back, or how half their abdomen was suddenly filled with malignant tumors. I also find a lot of experience protocols of chemotherapies. Some just smile tiredly about their hair loss. Others talk about bad infections because their immune system no longer works. Some still suffer for years from a chronic fatigue. In others, the veins into which the chemo is injected are attacked in such a way that necrosis occurs causing the arms to die. And for some, in the end the chemo simply didn’t work.
I often have to forcefully stop myself from reading on. I get short of breath and an electric tingling sensation runs through my whole body.
It’s like a car accident where I can’t look away, because I’m in it. That also has an effect on my friends.
Then I talk to Susi. Susi is the mother of another friend and Susi also had cancer. But you wouldn’t notice that at all.
On the phone I first tell Susi how I’m doing and that I don’t know if I should do chemo. Then I ask her about the course of her illness. Susi tells me quite willingly and calmly how that went for her. That alone does me good. Listening to her calms me down. That is quite strange…if you know that your counterpart had to endure something similar to you then a special closeness occurs. You automatically feel understood, even if you don’t know each other so well. Most importantly, what Susi tells me is fundamentally different from what I read in the cancer forums.
Susi saw the illness as a personal challenge that she could grow from. She has overcome her fear. She grew from cancer and not the cancer from her. What I also learn from Susi: your illness is yours. Only you experience it and only you can know how it should go on, what suits you. She recommends the website of the Biological Cancer Defense. This is a non-profit association that provides holistic advice to cancer patients.
When we hang up after two hours, I am a completely different person. And so I ask myself now, which method of treatment suits me best? I rely on my gut feeling.
One consideration is central for me: whether the probability of metastases is 3 percent or 12 percent is not so important. These are numbers and statistics and it can always be different.
I’m imagining a conversation with Future-Kolja, or rather with two different versions of future Kolja. One is sitting next to me in my apartment. It’s spring now. He has no hair anymore, looks a bit tired. I ask him how the chemo went. He says it was okay, but hard. He was stricken for weeks and is still a little weak. Couldn’t start the traineeship at the radio station on time because he still had to do rehab. Now he still has doubts whether he needed the chemo because there were no metastases. Then he looks out of the window and contently watches the pollen in flight.
What does future Kolja want?
I remain undecided and consult the other future Kolja. He looks much paler than the first one. He’s on his way to oncology, it’s already summer. He is walking cautiously. The last time he was on his way to chemo, he said, he toppled over. But why is he going to chemo at all? It’s already his fourth cycle, he says, and his voice resonates with bitterness. And when I ask him what’s going on, he gets really poisonous: “Why didn’t you do everything you could? You were a coward and now it got much worse.” He begins to cough roughly and there I also see that he has a scar on his chest. I want to ask him for forgiveness. When I see this future Kolja, I know: I am doing chemotherapy.
7. Meet the disease
On the site about biological cancer defense I come across the anthroposophical hospital Havelhöhe on the outskirts of Berlin. The hospital is located in a wooded area on the border to Brandenburg, where the Havel becomes Wannsee. On the hospital grounds there are workshops, a farm shop and a petting zoo with ponies and donkeys. The senior physician is Dr. Matthes. He spends over an hour with me, wants to hear a lot about my life circumstances. He then draws up a plan for chemotherapy. It lasts about three weeks. First five days of different preparations, then three days break, then another mixture, then one-week break, then one last dose.
When I get out of here, I will fly straight to the south.
Chemo days are long. In the mornings, we first check whether the cannulas are still sitting properly. Then the first bottles are hung on the drip. With the drip in tow one goes then into a bright room with deck chairs, where other patients are also being treated. Whenever one ampoule is through, you have to ring a bell and the oncology nurse brings the next one. This usually goes until late afternoon or evening. The remedies make me very tired so I often fall asleep. When I wake up and look out the window, I see it’s winter. Outside it snows and gets dark early. I tell myself, when I get out of here, I will fly straight to the south. Somewhere with beach and sun, where it’s bright and warm. I book a flight to Tenerife.
8. The course of the chemotherapy
For the first week, except for the tiredness, I’m fine. Eventually the side effects begin. First I get inflammations in the mouth, and then in the intestine. Gradually I get flabbier. My blood count is getting worse and worse. After a few days my arm also swells. The veins clog up; it becomes difficult to find new puncture possibilities. I have water retention and gain ten kilos within a few days. I have diarrhea. Although I am very much convinced that chemo is the right thing to do, there is this slight discomfort of harming my body to save it. I try to counter this feeling. In addition to chemotherapy, I am also trying to use the other services offered by the hospital. There is music therapy and art therapy. I regularly go to physiotherapy and once even to eurhythmy classes. But I prefer to be massaged. The procedural touches help to feel the body again in a positive way.
Since I made the decision that I’ll do the chemo, I’ve had the intense feeling of knowing what I want and being able to articulate it.
I tell my friends when I want to be visited and ask them to coordinate amongst themselves. We take walks through the snow on the Havel. I continue to take part in their lives. They tell me about the outside world.
Low immune system, isolation room
Then suddenly the stomach cramps start. It’s the worst pain of my life. I literally sit vertically in bed and have to be injected with strong painkillers. When the cramps come, terrible pain shoots out of nowhere and can shoot at any time – this breaks a basic trust in one’s own body.
The trust continues to break down more and more. My immune system is so low that I have to go to an isolation room. I am only allowed to leave the room in protective clothing, gloves and a mouth guard. Anyone who visits me must also put on protective clothing. Any germ could now seriously endanger me. From now on I cannot eat anything except diluted porridge. With everything else my stomach starts to completely strike out again. Every morning the loose tufts of hair on my pillow are bigger. When I grab my hair and pull away, my whole hand is full.
The days pass, the chemo is already a week ago. But I’m still lying in my isolation room waiting for my blood count to improve. Because the side effects were worse than I thought, I have to stay longer. I don’t know how long. My departure day passes and I notice that I underestimated the chemo. Meanwhile I already have completely bald spots on my skull. During my next visit I ask a friend to cut my hair completely. I look in the mirror and see that my face is also quite emaciated.
My mother knitted me a cap and sent it to the clinic. I put it on. It is very beautiful in such a sunny yellow, which makes my face look even paler. I try to smile. Think of Susi and the future Koljas. I want to shout to them: “I can do it.”
Sometimes I panic. I’m afraid to eat even the tiniest thing. But I usually catch myself again very quickly. I know that I need all my strength for my healing and for enduring the pain.
The redemption. Dr. Matthes comes into the room and says my leukocyte levels have risen again. My immune system has caught up. I’m allowed to go out of my isolation room, out of the clinic. I am released.
I book a new flight first thing in the morning. I notice that the journey is more demanding than usual. On the airplane, I sleep most of the time. When I step out of the airport in Tenerife, I see palm trees and feel warm wind on my face. Where I come from is mid-December, but where I am now, there is spring. And when I see the sea a little later, I thank past Kolja for taking such good care of me.
I’m sitting on the beach under a palm tree. In front of me is the Atlantic Ocean. It is very windy. I take a deep breath and it feels so good. The sand is very fine Sahara sand. It is the most beautiful beach on Tenerife – here in San Andres, a small fishing village. I remember being here for the first time almost two years ago with my ex-girlfriend. Back then we had so much going on with our relationship and ourselves. I think of the last few months, of the separation and of my new relationship with myself, my discarded artistic ambitions and my new job as a journalist. I feel that I already feel like Susi, that I have grown from cancer. The illness helped me to let go of many things. The questions about how I got cancer, questioning if the cancer is coming back – they’re not so important. Only one thing is important: I am happier than ever to be alive.
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Author: Kolja Unger
All photos: ©privat