I am on the road to recovery and wellness. I plod ahead, faithfully taking small steps forward. I cannot really make out what lies ahead of me. It's unknown territory. Sometimes it seems that everything will work out alright. Sometimes it seems that I will be broken forever. I strain to see a positive future. The alternative is too scary. While my visions of the future are murky and unclear, my memories of the past are tangible and real. I can crystallize my perspective simply by turning and looking behind me.
16 months ago, I was reeling from the devastating blow of being diagnosed with ovarian cancer. I was panicked about death and my final preparations for that event. Today I am at peace with death. Death does not scare me. The final deteroriation of my body before death is what scares me. I will not be able to escape that final loss of control. I hope to maintain my dignity during the surrender. The release will be sweet. Surrender has brought me peace.
1 year ago, I was starting chemotherapy. I had just lost all my hair except my eyebrows and eyelashes. I was bald for over a year. My hair and lack of said hair is an instantly recognizable sign of being a cancer patient. I look forward to the day when I am no longer so visible. My hair has started to grow back and is about an inch long now. My hair will bring me normalcy.
4 months ago, I was laying in a hospital bed with a perforated bowel. I had just finished 11 months of chemotherapy. My immunity was non-existant and I was septic. My whole body was infected by the bacteria that had escaped from the holes in my bowel. My oncologist has subsequently told me that he placed my survival at 20%. I survived. My cancer cannot be found. My oncologist was so happy to see me walking into his office for my post-surgery check-up. He shared my story with his student. The whole team came into the office to see me and everyone was happy and smiling and hugging. Their joy brought my success story into focus. I finally understood that I had overcome huge hurdles on my road to recovery. While I fought the little daily battles with nausea, diarrhea, vomiting or fatigue, I had lost sight of the big victories. My cancer team brought me perspective.
2 months ago, I could not walk anywhere without my walker. I barely had the energy to get myself to the bathroom. I relied on my mother to bring me a glass of water. I was pathetic. Today I can walk through the house on my own. Granted that my gait is unsteady and I still tip over sometimes, but I am walking! I have been out to dinner and to the art museum lately. Yes, I still have to use the walker in public. I have noticed many other people who have challenges greater than mine. I have noticed the men in wheelchairs in the park, the woman at physical therapy who cannot stand, the man at the psychologist's office who has to drag his right leg behind him. Those people have taught me to not be such a whiner. That f*&ing walker has brought me humility.
1 hour ago, I could not clarify my own thoughts. I knew I wanted to write about progress, about being able to judge progress not by looking ahead to a distant goal, but by looking back at how far you have come since you started the journey. Now, I have sifted through my scrambled thoughts. By writing this blogpost, I have gained insight into my unsettled mind. This brings me contentment and peace.
Wednesday, August 24, 2011
Wednesday, August 3, 2011
That dang "positive outlook"
I know I haven't posted anything in quite awhile. I have always tried to compose posts that have a message, a positive spin in the end. I have nothing positive to say right now and that has kept me from sharing. I now realize that holding back gives an inauthentic expression. If I really want to share my experience, I need to share the good and the bad.
I am struggling with keeping that positive outlook alive. My chemo is finished, but my recovery is slower that I would like. I am so frustrated and bored with my situation. I am stuck with a walker and sometimes don't think I will ever regain my strength and balance. I am afraid to admit to this defeatist stream of consciousness. Everyone knows that you need a positive outlook to survive cancer. Am I allowing bad juju when I think less than positive thoughts? What am I doing to my body when I get discouraged? All I want is to feel better. All I want is to be able to eat a meal without suffering bowel trouble. All I want is to be able to walk to the mailbox. All I want is to be normal. Is that so much to ask for?
I am trying to hear and feel the negative, recognize it and release it, be rid of it. I am trying to find a moment of fun and frivolity every day. I am trying to laugh again. It's a constant struggle, this positive outlook stuff. I am working on it.
I am struggling with keeping that positive outlook alive. My chemo is finished, but my recovery is slower that I would like. I am so frustrated and bored with my situation. I am stuck with a walker and sometimes don't think I will ever regain my strength and balance. I am afraid to admit to this defeatist stream of consciousness. Everyone knows that you need a positive outlook to survive cancer. Am I allowing bad juju when I think less than positive thoughts? What am I doing to my body when I get discouraged? All I want is to feel better. All I want is to be able to eat a meal without suffering bowel trouble. All I want is to be able to walk to the mailbox. All I want is to be normal. Is that so much to ask for?
I am trying to hear and feel the negative, recognize it and release it, be rid of it. I am trying to find a moment of fun and frivolity every day. I am trying to laugh again. It's a constant struggle, this positive outlook stuff. I am working on it.
Wednesday, May 4, 2011
Treatment Day
Chemo treatment days have come and gone. I have had 11 cycles so far, adding up to 11 IV Taxol, 5 IP cisplatin and 2 IP Taxol treatments. Most have been uneventful, with typically expected side effects, mostly muscle aches and nausea and vomiting and anemia. I have had 5 whole blood transfusions. I have 1 more scheduled cycle of 3 treatments. I am so close to being done that it makes each successive treatment harder to get through. Treatment days are very emotional lately. It's harder to wear the brave face.
I am grateful for having access to quality care. I am grateful for my oncologist. I am grateful that he truly cares and that he is driven by some higher purpose. He truly has healing hands. But these things don't make it any easier to be brave today. Some days it does, but not today.
I am grateful that I have met many OC sisters on the wonderful world wide web. They help me orient myself. They inspire me to be brave. We commiserate with each other's trevails. We understand each other in ways that those of you outside the OC club cannot fathom and I cannot explain. Today we lost another OC Warrior sister. That makes it really hard to be brave today.
I am grateful for having access to quality care. I am grateful for my oncologist. I am grateful that he truly cares and that he is driven by some higher purpose. He truly has healing hands. But these things don't make it any easier to be brave today. Some days it does, but not today.
I am grateful that I have met many OC sisters on the wonderful world wide web. They help me orient myself. They inspire me to be brave. We commiserate with each other's trevails. We understand each other in ways that those of you outside the OC club cannot fathom and I cannot explain. Today we lost another OC Warrior sister. That makes it really hard to be brave today.
Saturday, April 23, 2011
Another Book about Cancer
Emperor of All Maladies, a Biography of Cancer
I should stop reading books about cancer. I need to think about something else. I am glad that I took the time to read this though. It's an extensive look at the history of research and treatment of all kinds of cancer. The author is a physician who manages to write about scientifically technical material in an easy to understand language. I was fascinated! Who knew about treatment poultices made from crab eyes? Even though I loved this book, I would only recommend it to other uber-geeks like me.
5/5 stars
I should stop reading books about cancer. I need to think about something else. I am glad that I took the time to read this though. It's an extensive look at the history of research and treatment of all kinds of cancer. The author is a physician who manages to write about scientifically technical material in an easy to understand language. I was fascinated! Who knew about treatment poultices made from crab eyes? Even though I loved this book, I would only recommend it to other uber-geeks like me.
5/5 stars
Tuesday, March 8, 2011
Words
I have been thinking about the power of words. I believe that the words you say to yourself ultimately come to fruition. That's why it is very important to choose those words carefully, to be conscious of the content of your train of thought. I also believe that it is impossible to always have a truly positive state of mind. Just recognize those negative thoughts and words you say to yourself and move forward. I counter my own negative words with a positive, carefully chosen mantra. I know I chose properly, because those words return to me in profound ways.
This is one of my mantras. My cousin sent me these words. She showed me that words can be tactile and experienced in all your senses. In this way, Hope supports me, Hope nourishes me, Hope quenches me. Hope serves me well, but I also need more active words.
These words found their way to me. Two of these came through my cousin, who might be an angel on earth. The other came through a dear friend from a woman who donated her own charm so that I might experience the power of healing. These are powerful talismans. I wear them over my heart. I wear one of them reversed, my skin touching the word. I have found myself pressing these words into my skin with my fingertips. It's an unconscious act in which I catch myself several times a day. I run my fingers over the words, I rub them over my lips, I press them into my sternum. I feel them on every level. I am afraid that I might wear these words out, but I know these are powerful words. These words are mine to use for now, then someday I will be able to pass them on to somebody who needs them more.
Tuesday, February 22, 2011
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.
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.
Sunday, February 20, 2011
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. :)
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. :)
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