The Affronts to My Human Body

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As I get older, I have become an accumulation of scars. A hernia repair when I was 8 years old left two faint, raised scars. Two attempts to remove an ovary resulted in a keloid in my belly button and other healed wounds from laparoscopic oophorectomies. (The term oophorectomy still makes me giggle). My partial mastectomy early this year left a one-inch scar that just peeks out of my bikini top. I have another scar and a lingering hematoma under my arm from lymph node removal.

I understand the medical need for these scars. They are evidence of removing things that were causing me trouble. But there have been other, unnecessary, affronts to my body.

In the process to be diagnosed with my bleeding disorder (von Willebrands, a common malady that is not hemophilia, but it is severe enough I wear a Medi-Alert bracelet because of it), a lab tech cut me three times with a razor-blade. She cut me. I couldn’t freakin’ believe it when it happened. I said: YOU ARE CUTTING ME WITH THAT? She said yes and then she cut me. They wanted to see how long it took me to clot without medication, with a bit of medication and with a lot of medication. (They administered the medication by stabbing me with a needle in my stomach, which was not pleasant, but at least it was temporary).

The three scars left from this bizarre diagnostic procedure are not temporary. They are on the underside of my forearms and they are permanent. It looks as if I might have had a cutting problem (I didn’t).   I am not pleased that nobody has thought of another way to test for von Willebrand’s without cutting people with razor blades on visible places on their body.  I think we can do better than that.

Along with scars, breast cancer gifted me with a blue nipple (that is thankfully fading) and two permanent radiation tattoos. When I was in for the appointment to prep for radiation, the Radiation Therapist took out this box thing with a needle and ink. And then she proceeded to poke me with it in two places – right in my cleavage and on the side of my ribcage. This was bizarre and these tattoos look like blackheads. I asked if she could at least make them into flowers but she didn’t think that was funny.  They put stickers on me, too, and drew on me each radiation treatment with a pen. That didn’t bother me so much, but it does disturb others. One woman on Twitter recently said the markings made her feel like a piece of meat. I can totally see that.

I asked a friend who is a Radiation Therapist – why the need for permanent marks for radiation that is over in four weeks? She told me that we get tattoos because other ‎marks or tape wash off and there isn’t a semi-permanent alternative.

This all seems weird to me and falls into the category of: what is a big deal for me isn’t a big deal for health care professionals.  What I don’t like is the permanent nature of something that the hospital only needs for a few weeks.  This seems to tread on my dignity.  It strikes me that there are many ‘side effects’ from procedures in the hospital that are shitty for patients, but convenient for clinicians so nobody does anything to change it.

My friend did add: there is quite a bit of research looking at alternatives like henna, UV lighting and “invisible” tattoos and external surface landmark light systems.  To this, I say: YES DO MORE RESEARCH. As a patient, this is important to me. I don’t want a stupid blackhead tattoo looking at me for the rest of my life. If patient like me were engaged to set priorities in cancer research, I’d ask to figure out a way to get rid of the damn permanent tattoos, pronto.

Little black dots might seem minor in the grand scheme of things, but I didn’t like losing even more control of my suffering body one little bit. I asked my nice oncologist if it was medically okay to get a tattoo on my breast to cover up their tattoo. He said very solemnly, ‘there are no counter-indications to getting a tattoo.’ He probably thought: this woman is clearly in the middle of a mid-life crisis and losing her marbles, but he was too polite to express any judgment.

So I travelled to Hawaii and got my very own tattoo to cover up the radiation tattoo on my breast. I went to a place in Maui called Hula Girl Tattoo. The young dudes working there have seen everything and they didn’t even blink at my request. I told them they were doing good work covering up a middle aged mom’s cancer tattoo.

Part of getting my tattoo was to say: Take that health care system! I am in charge of what permanent marks adorn my body!  I’m also going to send the cancer agency the bill for the tattoo and see what happens. It was $200 US. (KIDDING. I AM KIDDING).

More seriously, I have this pipe dream that one day patients will work together with health professionals to set research priorities to figure out how to minimize the many indignities that are inflicted on us in hospitals.  Then we will no longer have cuts on our arms or permanent radiation tattoos.

I love the way every personal tattoo has a story behind it. (I also have three birds on my shoulder that symbolizes my three kids growing up and spreading their wings).  My new radiation-cover up tattoo is a constellation of hearts with a sprinkling of stars. A purple star has replaced the ugly radiation tattoo. One of the hearts is for my husband Mike, who has been my unwavering rock these past few awful months. (I didn’t think a tattoo of a rock on my boob would be very attractive).   The other heart is for me, to remind me to love myself. I’d post a picture, but the tattoo is in my cleavage. I know my extended family already think I share too much on my blog so I won’t mortify them further by posting boob pictures.

It hurt to get the tattoo, especially the part near my sternum, but Mike was there to hold my hand, exactly as he’s done the past eight months. Tears leaked out of my eyes, not because of the pain, but because I felt grateful my treatment is done, my cancer was caught early and I’m alive to tell this tale. My new tattoo is a symbol of my own story having cancer. This is my story to tell, not cancer’s. Slowly, slowly, I’m taking my power back, one heart in my constellation at a time.

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2 thoughts on “The Affronts to My Human Body

  1. Anarfi kwabena says:

    Very Interesting to read, I am radiation therapist myself and it’s a great pipe dream that will really transform healthcare and make patient feel more involved in their care.

    Looking forward to reading much more of this writings as well

  2. Carolyn Thomas says:

    Really terrific essay, Sue. All healthcare professionals need to read this, particularly this: “…what is a big deal for me isn’t a big deal for health care professionals.” Simple yet SO profound.

    I remember thinking the same thing every time I watched from my third floor hospital office window at all the people walking from the patient parking lot toward the main hospital entrance for their test or procedure or whatever had been circled in big letters on that day’s calendar for them. They’d likely been staring at that scary date on the calendar for weeks or even months. I knew that what to me was just a ‘normal’ morning of a chatty pre-shift coffee catching up with my work friends was probably the start of a scary new event for most of those patients. And the hospital staff who were about to perform those tests or procedures for them were likely enjoying a chatty coffee with their colleagues, too. No big deal, an ordinary day – except for all those patients…

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