Saturday, April 9, 2011

Shades of Grey

I didn't have a blog when I did my first round of radiation. It was the summer of 2007, on the heels of my first round of chemotherapy, and that combination of treatment at GW succeeded in getting the cancer into a remission for a year. But it was also a terrible, and I dare say traumatic, experience. If I'd had a blog then, I might have been too raw to post anything about it - the early parts of the process felt so violating.

The first appointment to prepare for radiation is a grueling experience. I don't know that my experience was typical, but here is a brief summation of how it went. In order to ensure the precise positioning of the radiation beams, you must lay perfectly still for a painfully long amount of time on the machine while techs you've only just met literally poke and prod you, shifting you into the correct position. They then mark your body with permanent marker, drawing huge Xs, and outlining the radiation fields, until your body looks like a treasure map. In the center of the Xs, they put a drop of ink, then needle in a small, permanent tattoo, marking the spot where the laser must align. To cap off this already highly invasive and painful experience, they start snapping digital photos of your now bleeding, inked, Sharpied - and perhaps I neglected to mention - naked, body for their records, lest they need to know how to position you in the future. All of this while you are not allowed to move.

The first time that I had to have this initial appointment, no one walked me through the process and there was no forewarning before the tattooing. I ran out of the room sobbing, into the small and very comforting arms of my friend Gwen who was waiting outside the room.

Following this appointment, I had four weeks of daily 8:30 am radiation treatments in which they administered a high volume of grey to my chest and neck where there was still active cancer at the time. My appointments, followed by full days of work, were tough and exhausting - to say nothing of moving apartments and applying for and getting a new job during that month as well - but nothing rivaled the difficulty of that initial, terrible appointment.

It's an experience that has stuck with me: an unfortunately memorable low-point in the larger cancer experience. In the interim, I have thought often about how I might have felt empowered with a little more information and self-advocacy - especially about the tattooing process, a particular sticking point (pun intended) for me.

So recently, when my doctor decided that a course of radiation was the next step in my treatment plan before the bone marrow transplant, I reluctantly resigned myself to repeating the whole process, one which, in the interim 3+ years had become both a survival point-of-pride and had calcified into a small bit of trauma that has stayed with me.

When I went in for my consult with the radiation oncologist at Georgetown, I knew what questions to ask and what requests to make to try to improve upon the process for me. I asked for an alternative to tattooing, explaining my cultural and familial sensitivities. The staff could not have been more accommodating, immediately bringing the right person into the room, who presented the possibility of an alternative: Sharpied dots covered by a tegaderm, in lieu of permanent tattoos, which would guide the radiation beams. They walked me through the full process and answered all of my many questions. I was an ideal patient self-advocate. I felt empowered to make the choice about the tattoos and felt that I knew what to expect.

I again brought a supportive friend with me for that initial poking, prodding, using-my-body-as-a-sketch-pad, tattooing, photographing, appointment. I spoke up, met the techs in advance, and made the game-time decision to proceed with new tattoos for the three radiation fields (for an ultimate total of lucky 13), realizing that the challenge of maintaining the tegaderm for a full month and the potential toxicity of the radiation beam going through the plastic, outweighed the anxiety about having new tattoos. In short, the medical techs, doctors and nurses did everything right. I did everything right.

But the appointment was as miserable an experience as one almost four years prior, and ended the same way: with me bawling in the changing room with a friend.

In reflecting on this, I think that my take-away from the experience is that there are elements of treatment that are just black and white. They are painful and hard, and outside of my control. There's no happy twist to put on it, no way to make the medical procedure itself feel any better.

But I can still try to insert the shades of gray by mining the meaning and inspiration that comes from such a low point. I can try to insert the shades of gray by finding something to strengthen me and develop my character, during these next four weeks of daily treatments. I'll keep you posted on what I find.


Emily Pearl Goodstein said...

although this post is about something so unpleasant, i am just so proud of you and the perspective you have on this experience. thank you for sharing it with us and hopefully comforting others during their journey.

Daphne said...

Thanks for this incredible posting... Having dealt with all kinds of medical issues over the last stretch, I've developed a coping/prepping strategy, namely, finding people who have had similar experiences/procedures and asking them what they wish they had known before undergoing said medical procedure. You've done just that for so many others.


Joy said...

Thank you for sharing this. I am honored to know and love you. I cried while reading this, because it brought back so many feelings of my own similar experiences. No tattooing, but several people holding me down and poking at/shoving things in my vagina while I cried. I was six. As much as they suck (!!!!), I think these experiences can make us stronger and fiercer and more compassionate. So proud of you, as always.

thomas said...
This comment has been removed by the author.
ro said...

I'm sorry you had to go through such an experience, and twice. It's enlightening to read about your self-advocacy and empowering yourself - I bet lots of people wish they had the confidence/self-assuredness to do that.
It's sad to learn that you aren't forewarned about these kind of procedures. Do they not think it's important for you to know?

One question, if you don't mind me asking: I am interested as to what you mean when you talk about cultural and familial sensitivities around tattooing, this isn't something I've come across before and I'd like to understand if you're able to explain any further. Thanks

I hope the rest of the radioation goes by with as little trauma for you as possible, good luck with it.

p.s. If you're wondering why thomas deleted his post, it's because I was accidentally signed in as him.