Deborah

 

 

 

The look that people give you changes dramatically when you say the words “I had cancer.”
Perhaps it’s pity that I see in their eyes because I was sick as a child. Perhaps its fear that I notice, because cancer is often synonymous with death?

I was neither brave nor pleasant, nor smiling, much less “full of life” as many of these little heroes, much younger than me, that I have encountered.
I was angry at the whole world. I was extremely mad and I did not understand why this happened to me, how I caught this “old person’s disease”.

This is my story. When I was a teenager, I was diagnosed with a disease that people normally dont associate with childhood, and that no one spoke about.

That was twenty years ago and I was 16.

There I was, sitting in front of my family doctor that I had contacted to make an appointment alone without telling my parents. Hours earlier in class, when I had turned my head my friend had mentioned to me that I had a lump in my neck. I remember laughing that my neck felt weird. I could feel a lump and all afternoon I felt my neck until I discovered another lump on the other side. I went to to the school nurse who told me that I probably just got hurt somehow. So I called my doctor. He told me that maybe it was a thyroid problem, and sent me to an endocrinologist.
I walked into that doctor’s office, and I didn’t even have time to completely remove my scarf that he tells me that this is definitley not a thyroid problem. He grabs his ultrasound camera, and without a word but with a very serious face he takes several photos. He calls the CHUV hospital in Lausanne, he speaks of lymphoma and calls my parents and I’m sent to the CHUV right away.

To me, the word lymphoma doens’t mean anything. I still have no idea.

The only thing I was told is that they are going to give me medicine and take care of me and that I shouldn’t be afraid.

I do a several exams, ct scans, blood tests, but I still dont know what it is I have. I dont understand why I dont just get a prescription for some medicine so I can go home – I dont feel sick at all!

When the doctor takes me into his office, alone, he tells me not to worry, and explains all the side effects of the medications I have to take. I hear: “nausea, vomiting,” but it’s not until he says that I might lose my hair that I ask: – But what is it that I have? He replies: ” A B-type lymphoma.”

“Great yes I know that, but what exactly is a B type lymphoma?”

– It’s kind of like leukemia but actually a cancer of the lymphpatic system. It is very treatable, you have a 60% chance of a cure.”

Like a bomb dropping into my world, the word “cancer” echoes in my head and I see myself lying in a box, dead in a coffin.

Until that moment, not a word of what they had been saying led me to even remotely imagine that I had cancer. Not even the word “chemotherapy.”
When my parents were there for the talks with the doctors, everything was evasive, nothing was ever clear and precise. The protocol was chosen but the doctors also mentionned other options, that they would discuss it with other colleagues and they kept telling us not to worry.

Right away I had to have surgery to install a box on my chest under my skin, a port-a-cath to receive medication, and I was quickly connected to a machine that injects chemotherapy. I had to stay in hospital to see how I reacted to the treatment.
A month before that I had had an xray for bronchitis and on the xray there was no evidence of lymphoma. So the doctors were sure that this is was a very aggressive lymphoma since in three weeks it had grown and I was already in stage 2 of 4.

I reacted very badly. I was so negative, I complained constantly. In my mind I was finished, I was going to die. I would never date, never go dancing at the downtown club, never pass my driver’s license, never celebrate turning 20.

Hoping it would help me, the doctors introduced me to a young woman of 22 who was being treated for a recurrence of the same cancer. She had just gotten married and was talking about having children. She was optimistic, cheerful, and gave me a little hope. I can still see her taking off her wig, revealing her bald head. I was secretly hoping not to not lose my hair.

The only time I did not feel sorry for myself was when I thought of my little brother. I was relieved that it was me who got sick and not him. And I remember the night before he had to leave for camp for a week. He had wanted to sleep with me all night and he stroked my hair, as if he was worried that when he came back it would not be there.

I was so negative that it was decided to change the protocol to try to go faster. So I received chemo every Monday for twelve weeks, each time as an outpatient few hours and then I came home.

The more chemo I got, the more the side effects grew. I lost 12kilos and went from 50kg to 38kg even though I measured 1m70. Blame the lack of appetite of course but also and especially because of the extreme pain that was caused by the canker sores. I had them everywhere in my mouth, open wounds that made ​​me suffer so much that I could not swallow anything. I was told if I didn’t eat they would install a long term iv tube up my nose to keep me nourished, and I wanted to avoid that at all cost, but they would not let me leave the hospital until I reached the threshold of 40kg. I hid my food, I threw it out quietly and I lied and said yes I had eaten my meal. An appointment was made for me to see a shrink because I was suspected of having anorexia. But I was in such terrible pain and absolutely had no desire to eat anything.

At the beginning of the treatment I was able to regain some weight back, but as time progressed the side effects were constant, making it impossible to recover.
I was so weak that just getting up to go to the bathroom was an ordeal. I was depressed, I still complain all the time, to anyone who would listen.
They kept telling me that I should not worry, and that I had a 60% chance of cure, as if it was supposed to cheer me up. But anyway 60% chance to me just meant that I had 40% chance of dying. That’s all I heard.

I only left the house to go to the hospital. I didn’t want anyone to see me sick, I didn’t want people to know that I had cancer.

Because everyone knows that when a person has no hair he has cancer! If you see a person in the hospital with an IV you know he is sick but not what disease he has.
With cancer, it shows. And when it shows, people look at you differently. I wanted to melt into the crowd, I did not want to be different.

I could not stand to see myself this way. My complexion has turned this yellowish color, I was skin and bones, my nails felloff, and my hair… My hair all fell out in three days leaving only three survivors of a skull as smooth as an egg shell.
It was then that I made acquaintance with the one who would be my best friend, that I would love and hate at the same time: this beautiful wig with long, silky hair.

I saved money on shampoo and haircuts. So I decided to put that money aside for a trip. It would be my shampoo vacation.
The thing everyone tells you when you lose your hair is: “But it doesnt matter, it’ll grow back!” Oh did I ever hate those words.
I put my parents through hell, they had to cater to my every whim. I felt that it was me who had to live though al this, it was me who was sick and looked like crap, too skinny, no hair, no eyelashes or eyebrows.
In my mind, my parents had their life, but I had no idea what I was making them go through and what they were feeling. I only though of myself, only felt my pain, only my hell matttered. I was the victim. And I know I used harsh words with them, especially my mom to whom I once even blamed for all this, saying it was her fault this had happened to me, because she made me. Today I am so ashamed for having said such things and to have had such horrible behavior toward my family who were so depserately trying to help me.

But at 16 it’s hard to put yourself in the place of your parents, I can’t imagine what my mom went through, what she endured, how she felt.
Some people would say, “Oh but it’s still pretty” when you dare to show yourself without your wig. Give me a break! Who ever goes to the hairdresser to have their entire head shaved, down to a shiny egg look, because it looks cute? Even if someone does, they still have eye lashes and eye brows, and are not pale like me!

So yes it was a disaster for me to lose my hair, and no, nobody can say it doesnt matter, because yes it mattered for me, a lot.
People think that it’s enough to wear a wig.. Except that you can’t wear the wig when your hair starts to grow back a little bit because it slides off. There are stickers to keep it in place but they need to be on smooth skin, so whenever my downy hair would temporaily come back between chemos it wouldn’t work! I actually had to shave my head once.

At home my family was used to seeing me without a wig. But I can still see the face of the postman, who looked at me with shock the day I opend the door with my bald head uncovered.

Time passed and I felt so tired and so weak, and I was just so sick with all the ulcers. I often wished very much that everything would stop that I just woulnd’t wake up after falling asleep. Yes I wanted to die so that everything would stop.
When I received the blood transfusion I felt a sensation that I hated. I had to have injections in the thigh every day to inscrease my immunity. It was painful, it was all painful.
The results after six rounds of chemo were good, the disease had regressed, but I then caught a virus and I spent ten days in hospital in an isolation room to protect me from viruses. I weighed only 38 kilos.
I had one nurse in particular who was wonderful and who could talk to me, find the right words at the right time and that made me feel a little better.
At the hospital I met other kids in treatment for cancer. Two girls with whom I have kept in touch. But I’ve also known children who have died. These are terrible times because ultimately only those who have experienced the same thing can understand. Sometimes it only takes one look to understand. This is a very special and indescribable bond.

Then one day, that fateful day, I stopped complaining.
That day I was waiting for yet another blood test in the waiting room. I was stressed because I knew I was going to get hurt again. And then I see this little boy, wearing a black Chicago Bulls cap covering his bald head. Our eyes met. And I can still hear his little voice saying to his mother: “Mom, you promised, you promised that this time you wouldn’t leave me alone to go to work.”

To hear those words made ​​me feel ashamed, selfish. How could I, who was twice his age, complain so much? I was lucky that I had had the chance to spend my childhood playing outside with my friends like all children, but he spent his time in the hospital! I can see myself putting myself in the place of this young child. Today I put myself in the place of his mother who didnt answer and just kept walking. How many times had she already had to leave her child alone at the hospital to go to work?

That day I stopped complaining. But my anger still grew.

I thought of watching these little kids fight against this disease, and spend their time in the hospital and I felt it was terribly unfair.
And I realized that if I didn’t make it to age 18, at least I had had a good life, the life that a child should have, the life that they are entitled to have.

What is life like for a child in the hospital? Fighting to survive?
Summer came and a CT scan was done to see how the cancer had responded to the treatment.
The cancer was gone, there were no more signs in my blood. But there was still a lump. Again I was told that I should not worry. It took a biopsy to confirm that it was scar tissue. But to be certain that no cancerous cells remaining hidden inside me, it was decided that I would undergo radiation therapy. They wanted to take every precaution to avoid a relapse.

In the time period while waiting for that part of the treatment to be scheduled and start, I felt alive again. Two weeks without treatment, without going to the hospital.

I took the opportunity to join my friends at the pool. I didn’t want to swim, just to spend time with them. I made ​​sure to hide my scar, secured my wig and there I was with a normal social life. But here’s the problem. Since I hid my illness from everyone for so long, very few people knew that I was wearing a wig. And suddenly, playfully, someone pushed me into the pool.

And I fell, deep deep down, and I sank to the bottom, my hands tight on my head to keep my wig on. And there I was, at the bottom of the pool, drowning. But there was no way I would let go of my wig, my friends see me bald! I struggled for a while and I thought to myself: “Great, this is it. I’m going to die drowned. It won’t be the cancer that kills me, it’ll be my wig! I finally found a way to wiggle up to the surface by undulating my body, like Winter the dolphin.

The first day of radiation therapy arrived. I had to undress and my first question was: do I have to take off my hair too? I was placed on a table and lines were drawn on my chest to define the area to be irradiated to the millimeter. Then three pointed trails were tattooed, which are of course still there on my chest today. But the scariest moment was when I found myself with a plastic mask covering my face with only a few breathing holes, in order to make a mold.

The radiotherapy sessions lasted barely 15 seconds. Nothing painful, just the feeling of being a vulgar piece of meat, head in a mask, screwed to the table so that I didin’t move.

My skin turned black, burned to have been irradiated. Already I had to find a way to hide the scar from my port cath, my bald head, now the skin.
I did not want people to know that I had a port a cath inside my body.

I did not want people to know that I had cancer because I did not want people looking at me differently.

Finally the treatments were completed.
Normal life started again, but nothing will ever be normal like it was before. For a long time, I had to go every three months in the hospital for a checkup, because the risk of relapse was high. Then after two years, a check up every six months and now, twenty years later, I go in once a year.

And I had to learn to manage a new fear. The fear of relapse.

When you enter the cancer world, you don’t know anything yet. But with a relapse, you know what’s awaiting you and that it will be even worse. If the cancer had not been completely erradicated from my body by the first treatments it would get stronger and I knew that I would never be able to conquer it. My body had reached its limits.

Today I am cured of my cancer but I am still being closely monitored, because it turns out that due to some of the treatments, some patients develop leukemia later on. This news made me laugh sarcastically. To save my life I had to have chemo that could give me another cancer today!
Sometimes I think cancer will get me someday, that it’s inveitable. Oh I know we all die some day, but I sincerely hope it will not be cancer for me. I find it hard to believe that I have the same life expectancy as anyone else, even if doctors tell me otherwise.
You never turn the page when faced with cancer. Because at every stage of your life, every day things will make you remember that you had cancer, just in case you might forget.

Whether at each first appointment with a dentist, a dermatologist, a doctor of any kind, I have to tell them all about it.
When I wanted to have children I wanted to make sure I had no chance of passing the gene on to them. If there was any risk however small it may be, I did not want children. And also, because of the treatment I received, the doctors were unsure about the effects on my fertility. The geneticist consulted reassured me. He told me that if I had children they would not have a higher risk of developing cancer than those of a healthy person who has never had cancer.
I had cancer when I was sixteen and I still hate to admit it because people look at me differently.
I had cancer. And I think I was neither courageous nor radiant nor as full of life as all those little kids, so much younger than me, who are my heroes. The treatments may have lasted four months, but they were the longest months of my life and I really thought I would not survive.
Yet here I am, married, healthy and the mother of two beautiful kids who are perfectly healthy.

I had cancer, that was twenty years ago and I was sixteen.

As told by Deborah to Natalie Guignard for Zoé4life. All rights reserved. September 2014.

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