Cancer Talks: Who I Am (Part Two)

NRC Interview: I was the one who was supposed to die

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Eleven years ago I was diagnosed. There was no expectation that I would survive. For several years, I lived as if I was going to die. Before I got sick I lived a very hectic life. I worked as a project manager at a design agency, and later as a freelance copywriter. I was always running around. When I got sick, everything changed. Work was no longer relevant.

(Work has regained some relevance. I want to generate my income, and I want to do something to contribute. The way I work and why has changed, but “work” matters to me again)

My symptoms weren’t shocking. I was tired, felt foggy, had bleeding gums, and suffered from minor spotting in between periods. My GP thought they were caused by hormonal changes, but based on a weird premonition I insisted on being referred to a gynecologist. They noticed some abnormal tissue but figured it would be endometriosis. Lab tests showed it was cancer.

(Protocol requires all abnormal tissue to be tested. If it had been left up to a diagnosis based on its appearance, it would have been left untreated)

When the diagnosis came, I had just left for Transylvania for three months, a region in Romania where I had been working as a volunteer (since 2008) and where I wanted to spend more time. After only two weeks of traveling, I had all these missed calls from the gynecologist. I called her back and she said: You have to come home, you have cancer.

(The calls had been coming in during a meeting with the Dutch Embassy in Bucharest, where I was talking about support for setting up a women’s shelter.)

Initially, it all looked optimistic. It had been caught in time, and there was even talk of fertility-saving treatment. However, after the removal of my abdominal lymph nodes, it turned out I had another, extremely rare, type of cancer: PEComa. I think at the time I was patient 113.

(PEComa now has thousands of new cases globally each year, and more research is being done for treatment with so-called mTOR inhibitors.)

My oncologist said: The chances of winning the lottery are considerably higher.

My oncologist said: The chances of winning the lottery are considerably higher. It is a subtype of soft tissue cancer. A little bastard that does not respond to radiation or chemo. When it appears in a location where you can’t cut it out, it’s over. I had 19 mets.

(During my radical hysterectomy, another 7 mets were discovered, as well as the primary tumor in my uterus which initially had not appeared on any scans.)

I moved in with my parents who lived in Drenthe. I was enraged at the beginning. My uterus had been removed, I was nothing but skin and bones, had a supra-pub catheter. If I am going to die, can it be tomorrow, I said to my mother. She kept juicing crates full of organic fruits and vegetables for me. I didn’t want to drink it, because I was dying anyway.

(I had been reading David Servan-Schreiber’s book '“Anti Cancer Diet” and gradually started to implement it, reluctantly at first as I failed to see the point. I had no space for hope. Gradually I embraced looking after myself, both as an act of kindness and a sense of action. It felt good to be doing whatever I could to be as “healthy” as I possibly could.)

My father refused to believe that I would die. I found that annoying too. I bought this tiny circular knitting tool, with a weight and a handle. Kilos of wool I turned through it. I kept spinning the handle. Afterward, it made me laugh so much, this mountain of wool. How did she spend her last day, people would ask my parents. “Knitting.”

(First I thought it would make a great art project, but eventually, I turned the endless meter of tube knit wool into a poof for my cousin, using a giant crochet needle.)

Don’t live every day like it is your last, live as if you would live forever.

Suffering from rare cancer comes with a lot of fear, insecurity, and loneliness. There is no information. The approach was to watch and wait, as there was nothing they could do. I found support on the American patient forum Inspire. My end-of-life counselor said something that helped me a great deal: Don’t live every day like it is your last, live as if you would live forever. I won’t live forever, but it alleviated the pressure.

(I often felt paralyzed with fear. Not just the fear of dying, but the fear of wasting time. I couldn’t figure out what was worth my time. Which is why the knitting episode felt so wonderfully absurd to me. Like my counselor’s advice, it liberated me.)

I was waiting for the day when new tumors would light up like a string of fairy lights on my scan. Then I could commence the countdown. After three and a half years the lymph nodes in my groin, which had been huge, started to shrink. After the next scan, the oncologist turned the monitor on his desk towards me: There was nothing to see. In the text box for the radiologist, it said: Everything within normal margins.

(By this time I had already gone passed the median PEComa survival time of 23 months, but had no reason to believe I wasn’t terminally ill.)

I simply couldn’t believe it. I had fully accepted that I was going to die (I explain this in a video I made). I had divided all my earthly belongings, planned my funeral, and had conversations about euthanasia. There was no “later” for me. To let it sink in that there would be a later, was too complicated for me. It still overwhelms me. I find it hard to make long-term decisions, even if it is just signing a mobile phone contract.

(My biggest long-term commitments are my pets.)

Am I healthy? No. Everything is pointing toward a spontaneous remission, but you can’t make any statistical statements unless you have reviewed a minimum of a thousand cases. Even if I live to be 99 years old, I will (on paper) always be a cancer patient. Not that statistics hold the answers. People who theoretically had a better chance than me, I have had to bury over the years. When that happens it feels like a mistake; I was the one who was going to die.

(Among my dearly departed are my cousin Peter Prop, my friend Albert Siebelink, founder of the International Gypsy Music Festival, and big love in college Martino Sclavi, movie director, and writer of The Finch in my Brain, and only recently my friend Ton Kaskens, one of the finest human beings to have ever walked this earth. Ever since having cancer I no longer attend funerals. Instead, I pick one of their favourite things, whether the first poppies in bloom or a fiery Gypsy song, and carry them with me that way.)

After my oncologist, Professor Verheijen published a medical article about me other people with the same diagnosis found me at Inspire. The simple fact of me being alive offers hope when statistics can’t.

For a long time, it was enough for me to walk around with a sense of wonder, to be around the people I love. Along the way, it started to itch again though. You keep the urge to act, as a human. Initially, I didn’t dare make the first move toward Transylvania. My parents said: It doesn’t matter how long you live, as long as you live how you want.

I now, partially, live in a wood cabin at the edge of a forest. It is rough, wild. I have two dogs and three cats. Bears walk past my garden regularly. From a complete fashion, design and city person I have turned into a mud and forest person.

I have learned how to build a cob house. How to cultivate a food forest.* When someone asks me, do you want to come? I often say yes before even asking where we are going.

If I want to take my dogs on a four-hour walk, I do it. The dishes I will do, later. I can also just sit, do nothing, and stare into blank space for hours. Or I grab a pair of garden shears.

Maybe that is why Transylvania is a good fit for me. Here I never feel like I have to hurry.

My conclusion is, that I am a glutton for life. Even if I were to live a hundred years, at the end I would still say: A little more, please. Because there is so much. So many places, so many people. You need five lives for it all. I accept that I will be leaving the planet with the idea: I would have loved to have done that too.

Acknowledgments: Professors of Oncology Rene Verheijen (now retired) and R.P. Zweemer, and all the nursing staff at the UMC Utrecht hospital. My end-of-life counselor and friend Mirella Satoor-de Rootas, Jose Provoost, cancer reintegration work coach, and Joke Mat for the NRC Interview.

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