Not Black.

   I find that having cancer has affected my wardrobe. I no longer have any desire to drape myself in dark, somber colors, especially black.

   B.C. (before cancer), I thought of wearing black as a cool badge of toughness and strength. This started in college, when I got to be the cool girl because I wore these black pants with zippers down the legs. It was the early 80's in Colorado, so everyone else was wearing polo shirts and Levi's with their Adidas. I wore skinny zipper pants and ankle boots. The frat boys called me "Robin Hood" and not in an especially flattering manner.  That didn't stop me from finding other ways to dress that expressed my disdain for those who failed to appreciate my unique sense of fashion. I went through many phases of dress, from jeans and plain white t-shirts to miniskirts and leggings to jean skirts and clogs. I always came back to black as my basic. I was an exercise in existential angst.  I thought it was hip, edgy and cool. Now it's just drab, sad and passe.

   A.C. (after cancer), I am finding the need to perk it up, wardrobe wise. Especially with a shiny bald head as my most obvious accessory. I "fem it up" these days. I wear bright pretty colors. I wear flower prints. I wear bright pink shiny lip gloss and floral earrings. I feel pretty. I wonder less about  why I exist, I am happy to exist. My go to color these days is pink. Pink, that pretty, life affirming shade of health, pink! Pink, pink, pink! Go figure.

Notes from the Chemo Diary

   More notes to myself, written while admitted to the hospital under the influence of a giant cocktail of drugs. Sometimes I feel that these moments are the most clear.... 

  I feel weightless inside my body, tethered by the weight of my body. Maya Angelou wrote a line once about feeling like she was just occupying the space inside her clothes. I am relating to that right now. I am bouncing and bumping against myself, the shell of my outside self. I feel light but weighted down at the same time.

   That cat is back, scurrying along the floor by the outer edge of the wall. He's a black cat. He ran under the bed but I can't find him anywhere. I wish I could remember his name.

   My tears are big shiny bouncy balls of light that flutter down my cheeks, over my chest and onto the floor. Kersplash.

   Remember, chemo makes me emo. :)

Crazy-Award-of-the-Day

     I am a crazy magnet. It's because I make eye contact with people, even strangers. And I smile when I make that eye contact. Normal people smile back, maybe say hello, and keep moving. Crazy people think they are invited to bond.

    Today I am thrifting, looking for unusual things for making jewelry. I found some marbles for jewelry, some great fabrics, a huge bag of crochet thread, and 2 vintage patterns in my size, all for about $25. I hit 3 thrift stores and 2 dollar stores. I was at the dollar store, thinking that I could find a bag of marbles with the toys. I didn't, but that's not the story. The story begins as I hear a gentleman talking rather loudly in the next aisle over. I think to myself, Oh no....get your stuff and leave before he makes it over to your aisle. Too late. He rounds the corner into my aisle.

     "I would love to find a shower curtain here."

     I am proud of myself for pretending not to hear him. I study the package of stencils in my hand.

     "I have a new shower curtain I got last week but I don't like it. It smells toxic. Its made in China."

     I reshelve the stencils and even straighten other items on the shelf. I look straight ahead.

     "I paid a lot for that shower curtain too. I paid $20.03 for it. When are we going to stop all this bullshit with China and manufacture our own goods? It's all because of the labor unions. Things are too expensive because American workers demand too much money. Except miners, we need a miner's union. What are we going to do?"

     I cave, make eye contact (big mistake) and say that I don't know.

     "Well, I do. I'm calling the FBI. I want them to check out this shower curtain. It's toxic. God knows what it's made of.....from China!"

    I am so sorry that I engaged this gentleman. I just want to leave. So I turn my back and walk the other way around the corner. What's in this aisle? Shower curtains! (no joke). I consider taking him a shower curtain but don't. He's still talking.

     "I guess she didn't like me."

     Now I feel guilty for walking away. Oh, the humanity!

This moment

     I have seen the end and it isn't pretty. I have witnessed the sequelae of ovarian cancer through the women who have gone before me. I watch and listen as their cancer recurs, from the first little sign until the end. From the first elevated CA125 result, through bowel obstructions, through the feeding tubes, the pain medication pumps, the pleurisy, the lymph edema, the cachexia, the hospice care admissions, the delirium, then one day it's finally over. It's not much to look forward to. It would be nicer to be run over by that truck everyone is always telling me about. You know the truck, as in "we could all be hit by a truck at any moment". That would certainly be a lot less trouble than the slow demise that seems to be the usual experience. Today, I learned of yet another ovarian cancer sister, Pateeta , who has been admitted to hospice care. Today, I went to support group and the sickest  woman in the room is another OC sister. Today, these woman and their experiences weigh heavily on my mind. They motivate me to truly live while I can, to not waste a single day or a single moment.
     Today, I will live the best life I can. I will eat good foods to nourish my body. I will walk in the park and hold my face to the sun. I will breath deeply and fill my lungs with fresh air. I will be present in my body, feeling the muscles in my legs as they carry me where I want to go. I will own my strength and be grateful for it. I will expand my mind with reading. I will exercise my creativity. I will share my view of the world. I will hope for comfort for my friends and family and myself. I will connect. That's the best life I can imagine.

    "I got this moment that I'm in right now and nothin else at all."
~ Todd Snider

Home

     Having cancer is described as a journey. Cancer patients talk to each other in these terms. "Where are you in your journey?" The term journey encompasses everything, including but not limited to your physical ordeals, your emotional status, your spirital well-being, your financial troubles, your body, mind and spirit. Cancer patients have a memorized spiel that can sum up their place in their journey. "I was diagnosed with stage 3 ovarian cancer and had cyto-reductive surgery in April 2010. I had a hysterectomy, omentumectomy, bilateral oophorectomy, appendectomy and was left with an ileostomy. I had 6 rounds of chemo from July to October 2010, IV taxol and carboplatin. I then had a second-look surgery where my ileostomy was reversed and micropresence of disease was found on biopsy. I am now in chemo for 6 months, from January to July 2011, IV taxol, IP cisplatin and IP taxol. I feel okay, all things considered." Depending on what questions are asked, that's my spiel. It locates me, tells other cancer peeps where I have been. I want to hear their travel stories so I can figure out where I am going. What to avoid, what to be sure to do, what to expect. I need their travel tips.

    I've been lucky enough to have traveled a little bit around this globe in my lifetime. I can tell you that there is always a point in a trip where I look forward to returning home. I want to eat my favorite food, or I miss my favorite socks, or I want to speak English. This doesn't detract from the trip, but rather enriches the trip as I stretch my boundaries while I learn to appreciate all the differences in this grand old world. I've come home a better person each time. One of my favorite memories is returning home through customs in Washington D.C. dragging my favorite hardsided vault of a suitcase behind me. The customs agent looked at my passport, smiled warmly and said softly "Welcome Home". That moment is imprinted on my experience. I was HOME. I could eat McDonald's french fries, watch Jeopardy in English, dig out my favorite clothes from the closet. Home.

     Us cancer peeps, on all our unique cancer journies, long for that moment when we get to be Home. But we don't get that. We don't get to be Home ever again. We are on a long arduous journey for the rest of our lives. We have to learn a new language and get up speed fast. Those favorite socks don't feel the same to numb feet. My favorite food is just plain gross today. Today I am longing for the past, for the person I used to be, for the place I used to inhabit. Today I want to go home.

Security?

I’m still navigating the obstacles that my relatively recent cancer diagnosis thrust up in front of me. I am learning that while my disease may have stolen who I WAS, it is forcing me to figure out who I will BECOME. I am still in chemo and feel oddly secure here. As long as I am actively fighting and treating and under the close eye of my medical team, I feel safe and cozy. I am incubating.  My oncologist mentioned that I might be able to go to 3 month checkups soon and I panicked. What will I do all on my own?!?!?


I hear that this is a common reaction. I will have to find a way to resume the responsibility for my own health and safety. I maintain a certain amount of control over my treatment these days. I nourish myself, exercise my body, placate my troubled mind, feed my spirit. I work this stuff around the framework of my weekly appointments. How will I function with the framework missing? If I don't have an appointment, what will get me off the couch? How do I introduce my new self to the world again? I am grateful that I have the time to mull these things over. I am sure that I will learn to navigate this obstacle as well as all the other unforeseen things in my path. I'll just roll with it. 

Today I will.....

     I stare at my keyboard. It's not for want of words, but because of a bounty of words. My notes on ideas litter the house. My trouble comes when I try to distill my thoughts and ideas into a clear concise blog post. I don't want to be a whiner. I don't want to be falsely upbeat either. I just want to be genuine. I page through the notebooks and scraps of paper looking for a theme. Little snippets quickly scrawled before the thought escapes. Notes on treatment, notes on life, notes on words, notes on spirituality, notes on perceptions, notes on emotions, notes and notes and notes and notes. I find it impossible to pick just one note. These notes all work together, they overlap and complement each other. I cannot pluck one note and expect to be able to convey the complexity of the whole symphony.

     I think I am onto something here. Cancer is big, but it's a billion little things assembled that are impossible to know quickly. Those little pieces will factor into every decision made for the rest of your life. The decision may be as simple as what to eat for breakfast, what clothes to wear, what to do that day. My cancer rides on my shoulder, whispering in my ear all day. It says "Eat high fiber grains for breakfast to avoid a bowel obstruction and a trip to the hospital". It says "Wear your warm hat because you will get cold because you still have no hair because you had chemo". It asks "Do you have enough energy to be away from home for 6 hours? How about your bowel? Can you be that far from a toilet today?" It's a nag. It's my constant companion and cannot be ignored for very long.

     So, I have managed to pluck a few little notes after all. This is the morning routine at my house as I live it day by day. I have found that is the only way to live with cancer, one day at a time. I am reminded of the old joke that asks how to eat an elephant. The answer is that you eat one bite at a time. So, I will continue to share my elephant of a story with you, one day at a time, one bite at a time.