Chemotherapy

Emetophobia and Chemotherapy

Pretty much since the birth of the internet I’ve been finding and talking to people with emetophobia. My first computer experience with internet was 1996, and by 1998 I discovered, after 39 years, that my phobia had a name and that there were other people like me! By the year 2000 I was a moderator of “emetophobia.org” – a discussion forum that quite quickly went to 10,000 members. There was no such thing as Facebook groups at that time. This website had so much traffic that you could go there any time of the day or night and find someone with whom you could talk. Thank goodness for time zones!

The great thing about a discussion forum (which still exists, by the way) is that topics can be organized into sections, and you can view the topics to see if you’d like to partake of that conversation. Now, Facebook groups have pretty much taken over the emetophobic community. Our latest podcast was about the pros and cons of social media support groups.

Despite changes in how emetophobics talk with one another online, there is always this question, “What would you do if you got cancer? How could you deal with chemotherapy?” Usually the responses are something to the tune of “I’d rather die.” Sound about right? It’s not.

I found the breast lump when I was just 37. My youngest of three children was only 11 years old. My world came crashing down, for a number of reasons only one of which was being freaked out about having to have chemotherapy. I had had some treatment, but I was still terrified of vomiting. I had always told myself that I would rather die than vomit, and thus I would rather die than take chemotherapy. I was serious about this. But let me tell you something: when death looks you right in the face, with a ghoulish sneer and an open door to utter darkness, you’ll take the chemo.

The reason we say we’d rather die than vomit is that our amygdala at the back of our brains is responsible for our survival and whenever it gets triggered it shouts out just one message: “Danger! You’re going to die!” With a phobia, for some reason the wiring in our brain isn’t just right and when we experience the phobic stimulus (nausea or someone else vomiting) our amygdala gets triggered. So we avoid vomiting at all costs, the way we avoid certain death. We believe that vomiting and death are pretty much equal and because we’re not faced with death we fear vomiting more. Avoiding death is pretty simple when you’re young and healthy.

But then actual death comes along. And suddenly they’re not equal anymore, and somewhere in our messed-up brains something clicks as if to say, “ok so vomiting isn’t really as bad as death and I sure don’t want to die.”

I went through surgery, chemo and radiation. The chemo was nowhere near as bad as they make it out to be on TV or in the movies. I only had to have chemo one time (four treatments, three weeks apart). I did get very tired and felt like hell for 2-3 days. They gave me a powerful anti-emetic – Ondansetron (Zofran) – at the time it was $30 a pill but I would have sold my cat, my dog and my TV set for it if I had to. I did not vomit. And this was in 1996 – they have much better, more efficient chemo now and a whole host of anti-emetics in addition to Ondansetron. They can give you a cocktail of about four or five of them at once if need be.

I never had a trace of cancer again. Since 1996 I’ve conquered my emetophobia, seen three children graduate university, watched my daughter dance on stage in Germany as a professional ballerina, held 7 grandchildren in my arms and loved each one like they were my own, celebrated 39 years with my husband, bought a beautiful house, been to Paris, had two wonderful and successful careers in which I helped a lot of people, published two books with a third on the way, and probably a thousand other things I never would have done if I’d said I’d rather die than have chemo. Trust me, life is so much better than death.