Patient

Last December, I was diagnosed with a rare and aggressive form of breast cancer called inflammatory breast cancer. People abbreviate it as “IBC”. (As an aside, for some reason it is also something that hardly anyone ever talks about, which is quite strange and in fact eerie.) It is considered to be a different kind of disease than other forms of breast cancer. It also has quite different symptoms from other kinds of breast cancer in that although it can present with a lump, it usually also presents with a combination of other symptoms such as redness, swelling, “peu d’orange” (which means your skin changes in a way that looks like the skin of an orange), inverted nipple, and soreness. Sometimes it actually presents without a lump at all.

In my case it presented with redness and much, much swelling and soreness. Because I had never ever heard of IBC, I figured it was somehow a result of my period and the fact that I was in the midst of an intense month of school and work–staying up late drinking too much coffee and working on projects, so I waited awhile before going to the doctor.

The first doctor that I saw actually did not examine me, and then proceeded to tell me that it was a result of breastfeeding. I laughed. The man had my chart in front of him. I did not and had never had children. A small technical problem with his theory. He then told me it was due to a skin infection and referred me to a private clinic—something ridiculous in a country where we have universal health care.

Needless to say his “diagnosis” was not much help, but after much pushing and searching for proper medical advice, I finally found an excellent team of medical professionals (who I thank god for every day!), and a month and half later I was diagnosed with breast cancer—not at all what I had been expecting to have happen in my life, especially not in my mid-thirties.

I mention all this to give you some background, but also to bring up an aspect of being diagnosed with cancer, which is the mental construct of the “patient“.

When in that span of time of my life did I move over from my normal, everyday life to suddenly becoming a patient? For me the answer is complex, as I guess it is for most—hum… see I fumble with our language here because I am not sure what words I should put here: “most cancer patients”? “cancer survivors”?; both seem limiting to me. I often prefer to write “people who have gone through a diagnosis and treatment for cancer”, but that is a long  phrase to write out multiple times. I guess “cancer survivor” works, but to me that carries with it much baggage and many imperfections.

Actually, for me the word patient has become a bit of an inner joke with myself. [uh-oh… the cultural studies major in me is saying that I’ve “re-appropriated” it.]

See, when I enter the hospital for my many appointments, I accept that I am a patient. To me the word is fitting within this context mainly because being treated for cancer requires So. Much. Damn. Patience. So in those moments I am happy to agree—if somewhat sarcastically—that yes, I am patient.

But to me, as soon as I leave the hospital, I am no longer a patient. In fact I have even gotten in the habit taking a shower when I get home from the hospital–partly for practical reasons as it is a place of many germs and gooey things and I am currently immune compromised—but also partly as a symbolic gesture to make a break between that part of my life and the rest of it.
Furthermore… I must admit that I have never, in what is nearly a year now of treatment, thought of myself as “sick” (apart from my often twisted sense of humour). When I was diagnosed I remember remarking to my brother that the entire experience felt very confusing to me as one day I was my normal healthy self, and the next day I was a “sick cancer patient with an illness”. Thankfully, he very wisely told me “Well you are healthy! Look at yourself. Your body is healthy and doing great. There is just a small part of you right now that needs care, but the rest of you is doing great”. Ever since he said that, I started a little habit: whenever I was lying in the hospital for any kind of treatment, I would look down at my toes and wiggle them a little to remind myself how the rest of me was still here and still just as it had been and still healthy, dammit!

Even when I was in intense chemotherapy, I made an effort to make the mental distinction that what could easily seem like signs of “illness”—e.g. intense nausea, my hair falling out, exhaustion, etc.—was in fact NOT symptoms of illness, but rather side effects of the medications I was being given to cure me.

In short, chemotherapy for example, is designed to catch and kill fast-growing cells… so the loss of hair and problems with the stomach lining are a form of collateral damage in that the chemo sees them as fast growing cells and doesn’t know that they are good cells and therefore gets them by accident.  I thought too, that to communicate this distinction to friends and family might help them as well, for example to know that the baldness is not because I’m sick, it’s because I’m getting better. 🙂

Some times it is easier than other times to keep these mental distinctions; sometimes, like when I’ve had to go into the ER, I’ll find myself exhausted, barely able to stand, in a room somewhere with florescent lights baring down on me, trying to tie my hospital robe so that it won’t swing open, and I’ll have trouble fighting for my sense of self and personhood as distinct from my position as “cancer patient”; and other times now I’ll find myself out of a stroll in the sunshine, with a perfect espresso in my hand, staring up at the sky and I’ll suddenly remember “Oh yeah, I have cancer—so weird”.

Anyway, just some thoughts for you… whether you’re going through or have gone through a cancer experience, either as a patient or someone close to one. Or even if you’re just a person searching for inspiration to take situations in your life and find new, creative ways to mentally mold them into how you want them to be. All the best to you all. xoxo