It's Been a Long Year, Country Joe

     It's been a long year.

     I have probably said that before in my lifetime, but this time I really feel it. I am definitely not the first person in the universe to feel this way. Take a peek at my favorite songwriter/singer as he focuses in on that end-of-year weariness. He says it better than I can. May I present that barefoot bard, the tipsy gypsy himself, Todd Snider!

(Applause!)

      I did get a chance to see Todd perform in 2011. I prayed for him NOT to do this song. Not because I didn't want to hear it, but because I didn't want my friends to see me sob. See, 2010 was a long year too. I was diagnosed in April 2010 with ovarian cancer and had undergone 4 surgeries and 6 months of chemo by the end of the year.  I had been relieved of my ileostomy bag with a third bowel resection. I was close to achieving remission.

    Even though I was still bald, I thought that I could see the light at the end of the proverbial tunnel. But it was an oncoming train. 2011 brought me more chemo, more bloodwork, 12 or more hospital stays, more blood transfusions, gallons of tears. Then that oncoming train ran me over. My bowel burst into pieces and I was trapped at the hospital for 6 weeks. It took me months to walk again.  I was at one of the darkest points of my life. Then I found Jesus. (Joking! Let's save that topic for another day.) Anyway....

     I shared all this so you might be able to appreciate my journey through these past years. I stand here at the end of 2011 and simply wish to move on into my life. If 2012 is the end of the world, let it be the end of the world I have known and the birth of a new life. I stand here, finally, fully present in this moment. Let me nurture my body, my mind and my spirit. Let me nurture others who may be in need. Let my life not be in vain. This is my wish for the future.

     And please welcome again, that charming outlaw storyteller, Todd Snider! He's alright.

Happy Birthday Country Joe!

Hope

Playing Scrabble this evening. Down to the last 4 tiles. Look down and there it is...........


H O P E. No arranging, just there, as a reminder. You always have hope.

Fish Farts

     Both of my chemo regimens involved the platinum drugs, like carboplatin and cisplatin. One of the many side effects of this class of toxic drugs can be ringing in the ear, or tinnitis. I have developed  this weird tinnitis, like a clicking sound. When I reported this to my oncologist, he smiled slightly, shook his head and said "I don't know about that". I have struggled to describe this sound. Today I found a video that has the exact sound. My tinnitis sounds like fish farts. Seriously, I hear fish farts.

I wonder if this will make the medical literature?

Return to Wholeness

My recovery from cancer treatment is complex. I struggle daily with medical issues from lingering side effects of chemotherapy. I take massive amounts of basic electrolytes to maintain normal blood levels. I shuffle around on numb feet. I regularly attend a cancer support group to learn from others and maybe to help others. I see a psychologist to help myself integrate what has happened to me with what I will become. I go to physical therapy to rebuild my wrecked body. I rely on interaction with friends and family to help me return to society. I don't work yet, hell, I can't really walk yet. I do all of these things in faith that I am recovering, a little bit every day.

But I am feeling schizoid. I have divided my online transmissions into sectors. I blog about books on LiveJournal. I update my medical progress on Pharmgirll Wire. I tweet. I blog here about my state of mind. I post on Flickr. I post crafty things in Creation Corner. I post food in Kathy's Kitchen. (I like alliteration.) I journal on Inspire. Mostly, I update on Facebook. I started all these different areas as a means to avoid boring you. I realize now that I have been presenting only one facet of myself on each site. A fractured facet, if you will.

Recovery is about returning to wholeness. Trauma fractures you. (what..too soon?) I am striving to find wholeness in my life. I am ultimately looking for purpose and reason, but I will settle for being whole, not only physically, but also emotionally and spiritually. Not that I know how to do that, yet. I am going to propel myself a few steps down that path by consolidating my profiles. My day to day life will leak onto these pages. Now that I am thinking about it, that is exactly how recovery can work. Each day can bring a little bit of normalcy, a little less about cancer and a little bit more about cooking and crochet. That sounds nice.

The C-Train

I read a blogpost today in which the writer described having cancer as taking a train. The train moves forward whether you are ready or not. You might want to stop and get off, but you cannot.  If you have a moment to look out the window, you will see the world whizzing past you. Most likely you will only notice this when the train stops for a moment, affording you a break. The car  is always full. People get off and  new people get on, so the car is always full.

I love the analogy of the train ride. I imagine the "C-train". I see a car full of people, some standing and holding those overhead straps. The buzz of conversation is loud. Then the train lurches and everyone falls silent for a moment, remembering that we are all riding the C-train and it's moving forward...again.  We look around and catch each other's eyes for just a moment, just long enough to recognize the solemnity and the fear of the moment. Then we all resume, the buzz of conversation building again. We might have been interrupted, but we will continue.

The Magic Number

     I recently watched a cancer movie on Lifetime or Oprah Network or one of those saccharine sissy channels. I was not going to watch this movie in the beginning.  I did not want to watch this stupid movie about cancer, directed and acted by women who probably don't have cancer. I did not want to watch another maudlin funeral scene of guests mourning their loss, ignoring that the cancer patient has the biggest loss of all of them. I did not want to watch a rerun of my own life. I did not feel strong enough. I go to support and therapy twice a week, every week, to learn how to be myself again. I have made some hard won progress these past 4 months. Watching a stupid cancer movie could send me sobbingly back into the dark cave from which I had fought so hard to emerge. But I was feeling strong that day. I watched that stupid movie anyway.

     I am so glad that I watched that stupid cancer movie called "Five". It's five different vignettes about five different women who are diagnosed with cancer, hence the title. Speaking from the viewpoint of the afflicted, I found these five women's stories strangely uplifting. It wasn't that they all survive, because they don't. It's that their stories offer me something that is not always readily apparent in my life. Their stories offer Hope. The directors did not forget that part of their audience was bound to be actual cancer patients. The stories were authentic. I was moved.

     I am going to share a little acknowledged fact of life for cancer patients. Many of us stop counting birthdays and start counting anniversaries. We count the years of survival after diagnosis. The magic number is five. The significance of five years is reckoned by the science of fighting cancer. Many studies measure success of treatments by looking at the "five-year-survival rate", the percentage of women still alive five years after diagnosis. Ovarian cancer (my cancer) has a five-year-survival rate of about 30%. That means 70% of ovarian cancer patients die within five years after diagnosis. That is 7 out of 10. That statistic weighs heavy in my head. Many studies do not follow patients after those five years, nor do those studies take into account the quality of life during those five years. It can be a false benchmark. On the other hand, if you can attain remission and maintain that status for five years, the medical community will unofficially consider you cured! They should be measuring Progression Free Survival (PFS). If five years of PFS can mean that I am "cured", come on, five!! Five! Five!! Five!!!

     I am not sure how old I am, but I can tell you that I have survived 18 months since my diagnosis. I am counting in much the same manner that small children count their birthdays. I am 1&1/2 years out. I am also counting my PFS. My tumor markers dropped into the normal range 5 months after diagnosis, but my oncologist maintained chemotherapy for 8 more months. My oncology team then declared me "disease free". I have maintained PFS for 5 months, almost 6 months now. I have made no concrete plans with my life yet. I tell people to ask me in five years. I will address any remaining critical issues at that point. After five years.

     The women who made "Five" somehow touched on all this. I am not sure if they knew at the time or if it was a serendipitous accident. The women in the movie have a ritual for that five year anniversary. They all get to "kiss the wall" in a ceremony and leave their lip prints on display. Four of the five women survive. 4/5 is a believable survival rate. The magic of the moment of marking your survival is powerful. It reinforces hope. Hope against odds and statistics. Hope against common sense and reality. My oncologist reminds me that there is no reason why I can't be in the survival group, but we have to wait five years to see if it works out that way. Someone has to survive, it might as well be me. In the meantime I am still counting. I will let you know in 4&1/2 years.

Related articles

• Cancer Patients Live Better & Longer With Wellness Coaching (purewellnessliving.com)
• The Disease That Whispers (psychologytoday.com)

The Aftermath of Chemotherapy

     Nobody said that going through chemo would be easy. I approached my treatment as a battle plan. I would have an infusion of carboplatin and paclitaxel every 21 days. I would have blood drawn every Monday to track my white blood cells (WBC), platelets and other blood chemistry. I would meet with my oncologist every 21 days, the day before my next infusion, to evaluate my progress. In the meantime, I would be hypervigilant against germs because my chemo drugs suppressed my immunity. I would be extra careful in preparing my own food. I would avoid any uncooked food. I would avoid large crowds and sick people. I would not floss (floss can cut your gums and introduce bacteria). I would not get any manicures or pedicures for 6 months (the tools used can abrade your skin and introduce bacteria). I would always flush twice (the toxic chemo drugs are eliminated through the kidneys). I would wash my hands more frequently. I ultimately became a germ ninja. This gave me great focus. This also served to distract me from the real issue, I had ovarian cancer.

     I attacked my cancer by faithfully following the battle plan. I would have the 6 months of treatment with carboplatin and paclitaxel. I would then have another surgery to reverse my ileostomy, implant an intraperitoneal port (a catheter to allow infusion of chemo directly into my abdomen) and to allow my oncologist a "second-look" into my abdominal cavity. He would look for any signs of tumor growth and take biopsies. After they found "microscopic evidence of disease", I would be scheduled for another 6 months of chemo, this time with cisplatin (a more potent platinum based drug) and paclitaxel. I would have an IV infusion of paclitaxel every 21 days, an overnight IP infusion of cisplatin every 21 days and an overnight IP infusion of paclitaxel every 21 days. I would still get blood drawn every Monday and meet with my oncologist every 21 days. I would occasionally need to have an infusion of electrolytes or whole blood. I would deal with the side effects as needed. I would take medication to prevent the nausea and vomiting. I would massage my numb hands and feet. I would rest on those days when I was too fatigued to do anything else.  And of course I would continue my campaign against germs. All this tactical warfare propelled me through the next year.

     One day at my oncologist's office, 14 months after my diagnosis, he told me that there was "no evidence of cancer." The battle plan had worked! I am victorious! I am invincible! The cancer is gone! He says that he doesn't need to see me for 3 months! No weekly blood draws or anything! Wahoo! I should wait a few months before any manicures, tattoos, acupuncture, vaccinations or dental work because I am still immuno-compromised, but otherwise, I am free to go.

     Wait a minute. Free to go and do what? For 14 months, my life has revolved around my treatment. I have forgotten how to do anything else. I still see the specter of cancer waiting at the end of the driveway. I still have neuropathy in my feet and hands. I have developed a balance issue and need to use a walker. My bowels still argue with me occassionally. I am still dropping weight even though I eat like a pig. I still need electrolyte infusions, even 4 months post treatment. I am still pissed off that all this crap happened to me. What am I supposed to do now?

     I am supposed to find a way to clean up this mess from all the ravages of chemo. Not only the physical challenges, but also the taxations on the spirit. This is harder than dealing with the actual cancer. Cancer cells in my body are tangible and treatable. Cancer thoughts in my head have tenacity. I look for distractions. I am learning to crochet. I am sewing. I am cooking. I am taking photos. I go to support group. I go to therapy, both physical and psychological. I need more distractions. I need a battle plan. I am floundering in the aftermath of treatment. I still google all the latest research on ovarian cancer. I am obsessing that my balance issue is a tumor metastasis to my brain. I cannot escape from the stranglehold of cancer. There may be "no evidence of disease", but it's not gone. It's never gone. The fight is not over. It will never be over.
    

   
    

Perspective

     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.
    

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.

Related articles

• Why a Positive Outlook May Be the Secret to Long Life (fitsugar.com)
• The Tyranny of Positive Thinking

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.

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

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.

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.

For the want of a cure

     What a powerful word, "cured". What it must be like to say, "I am cured". Pretty heady stuff.  I met a woman today who truly is cured of ovarian cancer. Her cancer was caught early before it had spread. She had it removed and was cured. No chemo, no radiation, just cured. I want to be that, cured. I want to be able to say those words. "I am cured." I want to say those words so badly. I want to say those words more than I ever wanted anything. More than I ever wanted anything in my whole life. So badly that when I feel the fear that I may never say those words, I break down.

     Why are some cured and not others? Early detection and treatment makes a huge difference in survival. Why are some cases detected early? Awareness of signs and symptoms. Both you AND your healthcare provider need to be aware of the signs and symptoms. Bear with me as I repeat the signs and symptoms again.
    
     * Bloating
     * Pelvic or abdominal pain
     * Difficulty eating or feeling full quickly
     * Urinary urgency or frequency.
     *See your gynecologist if you have these symptoms almost daily for more than 1-2 weeks.

     I look back and can see all my missed signs. I can hear my physician telling me about premature menopause. We both just shrugged. Why did I just shrug? Why didn't I know that those things I was experiencing were symptoms of ovarian cancer? I'm a frigging healthcare provider myself! (Hmm...I think I might be experiencing some anger today.) All this talk opens up the question of "what if"? For me, thinking about what might have been is fruitless. I need to look forward. I can only go forward with my treatments. I can only hope that someone reads about the symptoms and gets early treatment so that she can say "I am cured". I can mouth the words and set them free in the breeze, where she can catch them and give voice to them. I told you it was a powerful word, that word, "cured".

Related articles

• Spreading the Word About Ovarian Cancer (everydayhealth.com)

It's Always Something by Gilda Radner

 I failed to meet my goal of 50 books last year. I am starting anew in 2011. And I'm off and reading.....

This book is about Gilda's struggle with ovarian cancer. It's a subject close to me, ovarian cancer. I should stop reading other cancer patient's stories, but I can't seem to stop myself.  I was starting to get discouraged reading Gilda's account of what was happening to her. Sometimes it seems like the treatments have not progressed in the last 20 years. Each treatment, surgery, test, or side effect  that Gilda had, I have had. I was thinking to myself, "Good God, they couldn't cure this disease 20 years ago with the same stuff and they can't cure it now". Then finally, near the end, my spirits were lifted. Gilda talks about learning to live a full productive life with all the ambiguity that cancer brings to your life. I speak with Gilda now, when I say that the key is to live each day the best way you know how that day. It seems like a simple enough task, but I know how hard it is to remember to live your life. My favorite line is from the next to last page where Gilda writes that some poems don't rhyme. My own poem doesn't rhyme. I'm still learning my poem, day by day.

Related articles

• Abdominal Bloating as a Symptom of Ovarian Cancer (brighthub.com)
• Screening for Ovarian Cancer Saves Few Lives (webmd.com)