August 9, 2013
It’s 4:00AM and I wake up screaming. The house is on fire. My younger brother, sister and I are gathering up our favorite shoes and try to save the curtains for our mother. I’m not sure which mother. Meanwhile we feel the heat rising from the bottom floor. It’s hot, very hot. I fall down the stairs before there’s time to get out. I hear the scream before I actually scream it. The dream feels so real the back of my legs are warm to the touch. The bones in my thighs and hips hurt from the post chemo shot. I rise up and stumble to the bathroom for Advil. I catch myself in the mirror and think perhaps I’m heading to the gym to swim at such an early hour. My bald head is covered in a blue cap that makes me think of an athlete or Portland hipster. I pretend, for a moment, I am both then realize the hipsters are all still asleep. This is the second nightmare recently. In the first I’m climbing up a mountain that is nearly vertical. It’s in the Netherlands. I can feel the sensation, the point where the incline is too steep and I begin to fall backward instead of propelling myself forward. My counterbalance is a cat that sits on my shoulders and keeps me from careening over. In the dream there’s an entire country of us living our lives on this incline.
It’s odd being bald. The sensations against my head. The way the shower jets feel like a real massage. The wind through the window at night making my head cold while my body isn’t sure what to feel and sweats in response. The feeling of a friend’s hand running over the bristles on my scalp. It’s like reverse velcro where I feel what the velcro feels. I’m not used to it yet, this new bald look. I’m trying it on. I have wigs but don’t want to wear them yet. I need to get comfortable in my own skin with my new form of beauty. I realize now that I’m not my hair and my hair is not my beauty. I was actually quite worried about this as my long red hair was such a part of how I identified myself. I pretend I’m a high fashion model with an assignment. I straighten my back and walk taller, wear heals to cross the 6’ mark. I put on more make up and dangly earrings. I notice my neck looks much longer and I feel exotic. I keep my red lipstick fresh and I think I do actually feel better. People respond to me with a mixture of emotions. I hate the, “I’m so sorry,” and love the “you rock it.” I’m sorry too but somehow don’t want to hear that when someone sees I’ve lost my hair. I want to hear I’m “still beautiful,” or even, “you actually look okay,” as my neighbor Craig at the studio building said. Honesty, love, not pity. I know we all have emotion around our reaction to seeing someone bald from chemo. I have been that person who got teary when I saw a friend lose their hair. I know it, I accept it and yet it’s not where I am at this moment. Yes, the moments are always changing by the way. I want empathy but not sympathy. Yet how difficult for my friends to empathize with what is constantly changing. Within any given 15 minutes I can feel energized, grateful, totally exhausted, nauseated, grief and happiness. My body is up and down without notice and my emotions can follow.
I’m amazed at how often people, including myself in the past, say it’s “all attitude.” I don’t actually believe this. Who is to say that without having had the experience themselves? Speculation? Wishful thinking? Ignorance? What we say so we can fit cancer, and how we imagine we might process cancer, into a box? Easy enough to say but I’m realizing it’s far more complicated. On my bad week my body is flooded with chemicals. I hurt, I can’t see well, I’m fatigued beyond belief, I want to throw up every hour or more, my ability to work is severely compromised. I have to get through this as just as everyone with cancer going through chemo does. My mind and how I think about the process, as well as respond to each of the symptoms, does matter but I can’t say that “having a good attitude” is a constant or something that will keep the cancer from doing whatever it wants to do to my body. My attitude won’t save me from cancer if cancer decides to spread and kill me. It will make the journey my own however. I want some choice over the journey regardless of the outcome. Yes, I believe my outcome will be health. I’m living my life that way but with the understanding that I’ve seen many people die of cancer who also had great attitudes. Mine is not the “right” attitude to have. I don’t fault anyone who goes through this and feels sorry for themselves or decides to quit. I can’t imagine how millions of people have made it through this before me. Just like I couldn’t imagine how millions of people made it through a divorce or death in the family. We do it because we are human and it’s part of our experience. Somehow most of us do it when and if our time comes. I’m only in my 4th week of chemo having had just 2 rounds. I can’t imagine what I’ll feel like by week 16. How exhausted and depleted I might be then. I can barely take all the pills three and four times a day I have to get down now. What about after four months? My cat is no help in the middle of the night or when I’m both wired on steroids and wiped out from chemo. Useless cat.
Something to do, Something to love, Something to hope for. I put this quote on my fridge several months ago before I knew, or perhaps even had, cancer. I was reading a book called, “Calling in the One” by Katherine Woodward Thomas which is about finding a soulmate. I did almost a years worth of exercises in personal growth, exploration and wine drinking with two of my best girlfriends while reading the book. Those were the things I came away with. Not the perfect person to find but the person to be. The basics that motivate us in life, get us up in the morning, propel us forward to “be” happy not “find” happy. I’m finding that the real challenge in “attitude” is how to adjust my thoughts around these things that motivate and move me. When the symptoms are too much for me to do the something I do, photography, can I shift to be okay with thinking about it or planning my project from the couch? When ‘something to love’ is everyone & everything in my real life instead of dating to find a particular man, am I good with that? When something to hope for is the immediate future, feeling good enough later today to ride my bike for 10 minutes, instead of how I’ll build my business to the next level this year, am I content and happy with that? My attitude is about transforming what I see as success, love, beauty with each day in my new circumstances. My attitude is not about fighting or going to war with my cancer but about living my life fully right now and rockin’ what I’ve got!