Cancer Dancing

So, I’ve been doing this cancer dance for quite a while, and I want to talk about things that you should NEVER say to someone who is chronically ill. While it may seem to be helpful, one must remember that the Cancer Dancer is absolutely alone in his/her dance. Yes, yes, you can empathize. Yes, yes, you can offer hope. Yes, yes, you can share what worked for other people. But please realize that even among individuals that have the same disease as I do, they do not have the same number of leisons/stage/lymph or bone marrow involvement as I. And this is true for EVERY SINGLE CANCER DANCER. 

I belong to an online support group of MFers (what people with Mycosis Fungoides call the disease. Irony is not missed on us). Even within my group of 944 members across the world (remember, this is a rare, incurable cancer) we are very careful to offer a caveat when we share a treatment that works for us. We either begin or end our posts with “this worked for me” or “I found a great lotion…” Or “YMMV (your mileage may vary).” Why? Because Gd forbid that we offer some “advice” that someone with cancer takes with negative results. Gd forbid someone with cancer listen to our ‘best intentions’ and ends up in the hospital. Gd forbid someone with cancer believes the latest pop cure handed out by a well-meaning amature oncologist (“my medical credentials? I’ve never missed an episode of Grey’s Anatomy, PLUS I have memorized every differential diagnosis from House!) and ends up dead. Because it is that serious. 

A religious leader I once followed cornered me during Kiddush one Shabbat morning after services (where I prayed my soul out to Him, begging for a guide to lead me to a place where I had healers who would figure out my illness) to tell me she was sure she figured out what was wrong with me. Because someone close to her had Munchhausen-by-proxy, this amature psychiatrist had determined while I wasn’t hurting my child (chas v’ shalom! she said!), I was doing something to hurt myself, called Munchausen, and there was treatment. When I told her my illness was in the blood and not in my head, she replied, “you’re very powerful. Who knows what you’re doing.”

I took what she said to heart. After all, she was MY religious leader. So, when a strange red sore developed near my ear, I ignored it, sure I must have manifested it myself, somehow. I ignored when it travelled down my face, all bright red and streaky. However, when my eye started blurring and redness travelled to my orbital cavity, I could ignore it no longer. Self inflicted or not, something was wrong. After an emergency appointment with the friendly neighborhood opthamologist, it was determined I had a dangerous case of orbital cellulitis infecting my eyeball. After six days in the hospital with hourly vision checks and 24 hour IV antibiotics, I was released to the care of my attending hematologist, the latest healer of that time along my journey health and hope. 

He was visibly annoyed with me on my first visit post-hospitalization. I inquired as to the change in his countenance. His response? “You were so good about following up on things BEFORE they got to this point. Why did you let the infection go so long? You could have lost your eye. This was very dangerous.” As I write this, I can still feel the lingering pain, a remnant left by the damage to my optic nerve. I still remember the look on my doctor’s face when I told him someone I loved and cared for told me she though I had Munchausen Syndrome. He looked pained, and he softened, took my hand, and said these words: “If I thought for a second you were doing this to yourself, I would have scheduled a psych eval ages ago. You are a medical mystery, but do NOT have Munchausen Syndrome. I actually wish you did, because that disorder is very treatable. What you have is not.” He then offered to write a letter explaining my disorder (as it was understood four years ago) to anyone who doubted my illness. I could tell it hurt him to know people I cared about thought I was “making it up,” when clearly there was something quantifiably (his words) wrong with me. “This is in your blood. I can show you your bloodwork. Living with such little sunlight isn’t helping your case at all. I wish you were making this up.”

I went back to my mentor to tell her I had been hospitalized because of her words, and had almost lost my eye. I let her know how dangerous it is to offer pop medical advice. I also let her know that while I forgave her misstep, I would never forget that I received dangerous medical advice from a community leader. She cried, and while I am sure she was sincere in her apology, I no longer follow my religious leaders blindly. Because doing so almost literally left me blind. 
So, if you happen to have a Cancer Dancer in your life, be kind. Be sympathetic. Be loving. But remember, even if you have the same disease, you will never, ever experience it exactly the same as your fellow diseasee. Unless you are that person’s oncologist, do not offer medical advice. Even if it worked for your cousin’s best friend who also had cancer. And above all, remember, we have cancer! Cancer sucks, and in the case of my cancer, it will never be cured. So, be gentle as you watch us twirl and twist our way through our cancer dance. Be there for us, and please, don’t let us fall. And above all, never, ever be the one who causes us to fall. 

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