Monday, May 30, 2011

Un-clarity of mind

I was going to write something...but now I've completely lost it. My brain has not been working lately in that capacity. I have been struggling to keep a straight thought lately. Chemo brain? I know many joke about such a condition, but I have become a believer. It seems to be a great excuse anyway for everything misplaced, forgotten or turned upside down. The amazing thing is, I always seem to know where my keys are in the house.

My son came to say goodnight. He likes to stall with a long snuggle and a little story from the day...and another glass of water.

What was I saying? What was I even going to talk about? I have no idea. It's gone. Lost in some part of my brain that was burned away by a chemical cocktail meant for a few cells somewhere else in my body causing so much trouble.

I will continue to write, but for now it has been quiet at the keyboard. Frustration sets in as I stare at the medication bottle I must open every day to ingest the tiny little pill I love to hate. The drugs meant to keep the cancer away. The pill that changes a part of my personality with its not so pleasant effects.

Another part of me works hard every day to remain physically strong. As I accomplish shifting my body toward the shape of an athlete, I am finding the new identity I am comfortable to wear. Pushing all winter has given impetus to my health and strength, but in doing so I have crossed some line into a new world. My goal has been to train for racing with my team. I am a member of a dragon boat team.

Next weekend will be the first dragon boat races of this season for me and my team. Winter has been long and difficult this year and so the excitement builds. I live in the Northeast and so much of training for this sport goes indoors in the gym. Even as the weather breaks, the rivers are high and dangerous. The water shows its unexpected power every day. The surface appears calm, but the power and force of the current lies beneath churning the unknown debris. Cancer works like that. Things look smooth on the surface while underneath there is unseen trouble.

And so, part of this journey is shifting from the gym into the boat to reacquaint ourselves with paddling on the water. It requires respect and focus to disturb the angry force with only a paddle to cut the thick serenity. It has become hot quickly this weekend and there is not enough cool oxygen in the air to keep the mind clear. There is nothing else to think about but to keep in sync with the paddler in front of me. Keep in time. Plunge the paddle into the thickness. Breathe. I hide the fact that my heart is pounding out of sync with my breath, and I become dizzy with the strain. I find the reward in working together and I finally understand it is less about the body and more about the mind.

The clutter of thoughts sinks under the spring current of muddy water. The serenity of motion propels me forward. My body is spent and at times I wonder, why am I doing this? I return the next day and the day after that. It is on the water that I am allowed to go barefoot; to not worry about covering scars. On the water, there is no chemo brain or separate identity. Many professions, many walks of life, many levels of fitness all melt into one effort to move the boat. It feels good to feel strong and move forward. There is peace in letting the mind clear hearing only the sound of the water's wake the boat leaves behind. The journey of healing has taken me to unexpected places, and now the wake is finally settling back into the glassy surface.

Saturday, May 14, 2011

Outlook Expressed

The one thing I hear, is the idea that having cancer changes your outlook on life. The first letter we received from a friend when I got my diagnosis of breast cancer contained such sentiment. We were all, not yet 40, with small children, careers, stability finally just beginning to take hold. This friend too, was a young cancer survivor. It was difficult to accept in the moment as we both read the words of the terrible journey about to arrive. Words meant to offer a taste of reality and encouragement. “I bet you and your wife look at life differently now”, he wrote. Maybe that’s true now. Back then, I had no idea what he really meant. I thought it was simply a cliché meant to offer understanding.

I am now a part of a club I never wanted to join. Saying the words, “cancer survivor” does not yet easily roll off my tongue. When it comes at a time in life when I am not yet looking for gray hairs, it is especially isolating as an identity. I thought breast cancer was an older woman’s disease. I felt side swiped. I had a short career. I had young children just starting school. Being thirty-something, everything is out-of-order and chaotic as the momentum of one day bleeds into the next. Reflecting on the words of that letter we received from someone who “got it”, it was finally sinking in how different it was to cope with a catastrophic illness at a young age. He was the only friend we knew our age who had cancer. Even now as I write this, we remain uniquely apart from our peers facing this disease and how it has changed our lives. A support system is what is needed to simply get through the day. At this point in my life, I was the support system for everyone else.

Our children watched their strong mother melt away as my body quickly weakened during treatment. It was lonely at the hospital and especially at the breast care specialist. “How is your mother doing?” asked by a stranger, who was surprised when I got up wearing my plastic ID bracelet. Most of my room-mates at chemotherapy spoke of their grandchildren and they complained of vacations never planned. Their self pity made me angry as I watched their adult children who were my age escort and assist them through their ordeal. There I was, with my small children too young to take life over; my own parents too far away and frail to be of assistance. In the beginning, you get a pile of brochures and booklets telling you what to expect. None of those materials told me how to hold back my tears when my 6-year-old hugged me one morning saying, “I forget what you looked like before the cancer when you had long hair”. Then depression and guilt looms as my 8-year-old son helps his little brother pack his lunch for school while I lay on the couch motionless. I am supposed to be there for them, not the other way around. It was then I realized my children’s ability to cope would depend on taking my lead. I strayed from the usual pity train and began to smile my way through treatment. I’m not saying I took lite of it, but rather I chose to change my attitude and mental outlook. I established stronger emotional boundaries with those that would take pity on me or brought me down. I surrounded myself with those who knew me best and would understand how to lift me. Since then, I have learned to mourn the losses and accept life as it comes. People tell you to keep a positive attitude. It doesn’t always come easy, but it is a choice that has the power to change things. “That’s what he meant.” I realized.

I have certainly had my moments, but one thing I discovered as I faced all the difficult treatments was that people smiled back when I smiled. Others felt inspired and encouraged as I shared my new outlook. I received many positive notes and a new cheering section began to form in my life. I shared this with my husband and my sons which served to strengthen them. The reflected smiles boosted my strength. I watched my sons cope without fear and their resilience connected us with roots of an oak tree. The language of self-pity was absent in our home and our positive outlook expressed daily.

That first letter is rooted in our souls. I remember wondering how they dealt with work and the kids. Now we are forever connected in this ugly experience. It’s all those little things in everyday life that we take for granted; when suddenly we cannot do those simple things. It forces us to think upon our mortality. It reveals our true vulnerability and the fragile nature of life itself. Everyone warns you when you have children, “they grow up fast”! That has a whole new meaning in the face of cancer. The resilience my children have shown propels me forward. I realize they are much stronger than me and I have learned to shift my outlook on life to the wise innocence of a child. We now leave the dishes in the sink and cuddle up to a good book. Cancer interrupted our busy lives. My children taught me to focus on today.

Friday, May 6, 2011

New York Times & ACS Publication

Wonderful and unexpected news:  my April self-portrait has been posted on the New York Times photo gallery of cancer survivors.  In a book to be published next year by the American Cancer Society, it will comprise 200 to 250 "Picture Your Life After Cancer" submissions that were featured on The Times website.  My submission out of over 800 others has been selected for the ACS publication. 

To view the portrait on The Times website:

If you are directed to the main photo gallery, it's this one featured in my April blog entry:

Many thanks to Karen Barrow, Producer of Health, for this amazing opportunity.  Please take the time to look at the gallery and all of the unique submissions so many brave survivors have posted.

Posted on the New York Times website gallery:

The beginning of knowing comes in interpreting the first impression. We look upon others and begin the story. My diagnosis of breast cancer brought a shift in my perception of self. I looked even deeper inward as the outside began to fall apart. Others treated me differently.  I found an urgency to pick up my camera. My comfort zone behind the lens moved as I wanted my young sons to have recorded memories of time spent together. With a photograph, we have the power to stop time. Looking into one, we can travel back to feel that moment. I have a new identity as a survivor. I do not know what the future holds. My past has shaped me. Survivorship is a fight. Life is a gift. I got my first tattoo in celebration of completing treatment. Cancer has been my hidden dragon. The Chinese reads "Dragon Slayer."

Life Ever After

Life Ever After:  A short story about moving on just past the line of treatment back into life.  Facing post treatment issues as a young breast cancer survivor.  Posted on Stupid Cancer blog.
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