breast cancer and trauma | My Eyes Are Up Here

I dreamed last night that I packing up to leave my office at the University of Washington because I’d run out of grant money. That actually happened in 2007. I thought I was all packed and then found a bunch of cabinets full of things yet to be packed. I realized I had a plane to catch to go home to Seattle. I walked around the university campus and it was actually the campus of Indiana University. The University of Washington is in Seattle. Indiana University is in, you know, Indiana.

I walked around campus trying to get someone to help my move my remaining boxes before I was due to get to the airport. A couple of men offered to help me. I finally realized that I could not be in Seattle and Indiana at the same time. And how was I going to transport all of my office stuff back home and still make my plane. And then for some reason, the men and I walked into a building. The building exploded right as we walked up to the doorway, but some how we survived. Then I woke up.

In the dream, my assumptions about where I was, what I was doing, and how I was going to do whatever it was I was doing, exploded right in front of me. We live our lives according to assumptions. Those assumptions can be challenged in gentle but persistent ways. They can also be thrown on their head.

Until May 24, 2012, I assumed that I would not get cancer in my 40’s. I assumed as a woman from a long line of long lived women on my mother’s side that I would live a long life. I assumed that I would be alive long enough to raise my daughter and to retire in my 60’s or 70’s. (Note to hubby: Early 70’s, tops, and working part time.)

Then the assumption of health that supported all of my future life plans crumbled. I have worked to pick up the pieces, make new pieces, and reworked the foundational assumptions I have about my life. And all along, I have worked to be true to the person that I was before and not define myself only by fear and insecurity.

The early part of this process focused on physical reconstruction of pieces. Surgeons have subtracted and added in many iterations. When I was home following my mastectomy in August 2012, I was looking on Ebay for clothes. I had lost a considerable amount of weight and I do nearly all of my clothes shopping online. I came across this photo.

The mannequin pieces do not fit together and the arms are placed on the wrong sides of the body. It makes the whole figure off. The large hands in particular reminded me of how drag performers can look. They have many feminine physical characteristics through make-up, body padding, binding, falsies, and good acting skills. But there are almost always clues. Things that don’t look quite right. Some drag performers take advantage of this to comedic effect. Grady West, who developed the character, Dina Martina, is a 50 something year old man with a pot belly and hairy back. He wears over the top feminine glitzy costumes that are several sizes too small and his dresses don’t zip up all of the way. Dina’s make-up makes Tammy Faye Baker look like a model for Pond’s cleansing cream. He uses the mismatched puzzle pieces to great advantage and his shows are hilarious.

Other drag performers aspire for “realness”, to be able to pass as a real woman. I was introduced to this concept when I saw the excellent documentary, Paris is Burning, which was filmed during the mid- to late-80’s in New York City. It was about the “Drag Ball Culture” in the city. (Remember “voguing”? It started there, not with Madonna.) I was fascinated by the communities that were built by the men in this culture. Most of them had been rejected by their families and by society, as a whole. But they made their own families with “drag mothers” and familial living situations. I thought the way that the men found a way to pick up the pieces and make news pieces to construct their own families was inspiring.

I know that there was a short time after my mastectomy when I was worried about “passing” for a real woman. But mostly, I have been trying to reconstruct the pieces of my mental life and to dance to the changing rhythm of my daily life.

Life has pieces that change. Life has pieces that need to be replaced. Life has pieces that are lost and cannot be replaced. But my life is whole and I belong here.

My husband built a deck off of the second story of our house. To say that it is beautiful is an understatement.

July is the driest month of the year so he waited to stain it until now. We also have a large wooden patio off of the ground floor, which is in need of refinishing. John got some stain samples, which he carefully applied to samples of all three types of lumber he used to construct the upper deck. We chose the stain color together.

He started staining last weekend. He ran out of stain on Sunday. The kind he purchased was not available at any of the stores that are open on Sunday. Additionally, this stain is quite expensive. He decided, after consulting with me, that he would buy a similar color, more economical stain for the lower deck. However, this time, he did not test the stain on wood samples. John just started staining away.

By the time I looked at it, here’s what I saw.

When John asked for my input on the deck color I said, “No orange.” There it was, a sea of orange. And I felt irrationally anxious and angry, not so much with my husband but with the color.

I may have asked John to sand off the finish.

I may have even characterized it as “looking like ass.”

I may have said, “Maybe I can learn to live with it but it looks like BREAST CANCER!”

I have had a couple of run ins with Oompa Loompa orange during my time as a breast cancer patient. I tried to make light of it and I actually enjoyed writing posts like Wonky Wonka Boob. During the initial placement of the tissue expander, betadine was used to prep my skin for surgery. I also had trouble with some tissue necrosis after that surgery. Since the betadine was not removed during surgery, I was left with a Oompa Loompa orange “breast”, complete with tissue necrosis. When I had a skin graft the following month to correct the necrosis, I was awake. I saw the nurse put betadine on my skin as she was prepping me for the surgery.

And guess what? Betadine is a liquid, just like deck stain. And it stains the skin just like deck stain puts color on wood.

What’s the big deal about having orange skin, Elizabeth? You’ve had a wire in your nipple, been injected with radiation multiple times, had each boob squished for 7 minutes at a time for a PEM, and had a mastectomy that made your chest wall look like Craters of the Moon.

The difference is that my first two plastic surgeries took place at a time when I was mentally and physically exhausted. I was working too many hours upon my return to work following my mastectomy. It was hard to know how much work I would be able to handle and I guessed too high. And even trickier is predicting the times when the strong emotional consequences of dealing with breast cancer will come crashing down. And in the fall of 2012, there was about six weeks when theo accumulated stress and grief that came crashing down over me.

So orange has become associated with a really low scary time of cancer. Some might even say that it is a trauma cue for me. Stress can cause trauma but not all stress is traumatic. And not all people who’ve been traumatized developed Post Traumatic Stress Disorder (PTSD; I mention this just for clarification because I don’t think I have PTSD).

I knew I was stressed. I knew that I was experiencing grief. But trauma, that was news to me, until I went off on that orange deck.

I’ve got a lot more emotional work left to do on breast cancer. I’m going to keep digging. Fortunately, I have a big and strong shovel.