Anniversaries

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April is my cancer anniversary month. It marks when I bid goodbye to my intended life (so presumptuous!). Initially there was a huge divide between my life BC, before cancer, and WC, with cancer. I am four years into my new life and it more than not resembles my old. I have reclaimed meaning beyond my medical appointments. Cancer is not ALL I think about, instead it is a new nuisance much as my before cancer life was filled with nuisances.

I retain respect for the unending panic that subsumed me when informed I was terminally ill. I make room in my life to reach out to the newly diagnosed knowing the fear, as well as the power of role models – people living with cancer and people in treatment.

In August 2010 Christopher Hitchens shared the sentence that most resonated with me “…but now that I view the scene in retrospect I see it as a very gentle and firm deportation, taking me from the country of the well across the stark frontier that marks off the land of malady.” He never got a chance to rebuild with cancer as he died in frontline treatment.

I appreciate my years of living with cancer but I suspect I will never celebrate my cancerversary with any cockiness or zest. I walk on tiptoes, still, always, but content. I am here, I am here, I am here!images

Below I share my first communication post diagnosis. I hope and suspect that I will never again experience such despair.

Journey With Cancer – The First Hello
Written 45 days after diagnosis (June 2010) and my first formal communication to friends and supporters.

April 20th, 2010 at 6 pm, I park on the side of an Oregon highway waiting for a return call from a doctor. It is gray. I learn that I have “advanced cancer” in a brief call. 36 hours later that diagnosis is refined to Stage IV Ovarian Cancer. There is no Stage V.

In the diagnostic roller coaster leading up to this call I have bartered endlessly, assuring myself of how accepting I could be of any diagnosis but cancer. Congestive heart failure, sure. Rheumatoid arthritis, easy. A fungal infection with a 25% risk of death, absolutely. I share my bargaining chits during various emergency consults where anonymous healers attempt to figure out why the lung of a healthy, fit woman has collapsed. My negotiations fail to amuse a single doctor.

April 22, 2010: it is Earth Day and two days after that initial call. It’s also day three of the oil gusher in the Gulf; it’s the day my dearly departed little brother would have turned 43; and it is the day I am handed my formal death sentence. Any show of control collapses. I have drawn the shortest straw in my diagnostic bundle. My life as I had constructed it comes to a close. Crash, boom! Any illusion of free will has been replaced by the will to live.

It is 45 days later now. I have been coming to terms with my short straw. I see my job as using acceptance to construct a new life, however brief. In recent weeks I try on many faces including wise, gracious, funny and sad but I am never as genuinely sad as when I walk out of my Ovarian Cancer Support Group meetings. It is then I feel in the deepest pit of my stomach the very imminent reality of my death. God damn.

Feeling my death is so raw, unlike anything I have felt before. Thinking about my death stays a mere exercise of intellect – it is a removed and obvious truth that I can surely handle. Feeling death is so incredibly sloppy. Slow tears trickle out as I move towards a very different type of acceptance and grief. There is nothing for me to give permission to in this experience. Death is coming for me and it could be coming fast. In allowing myself to feel the reality of death, my stomach lurches endlessly, radiating out in cold, sharp spasms. It is as though I’m enduring a constant replay of the dream-fall when sleeping – the one where the stomach heaves you awake just as you realize you will hit bottom. But this is real and there is no dream to awaken from. This is a Stage IV Ovarian Cancer diagnosis when you have suspended thinking and grasped TRUTH.

I am re-born in this free fall. I am re-born to the council of my medical team, “You must start living as if the next three months are your last. And when you are still alive at the close, make a new three month plan.” This is living with Stage IV Ovarian Cancer. It is a sneaky diagnosis that will allow me to look and feel great as the cancer makes its own decisions on longevity. It will decide which three months are my last. We will all find out together as the final three months dawn.

I believe I can do this. I will learn to live in three-month intervals. I will hope and dream and build in smaller allocations of time. But am I going to do this in my heart or in my head? In my head it is a mere storyline I can make interesting, wise and abstract. In my heart it is a constant tremor radiating from my stomach as I fall to my death several times a day or, sometimes, several times an hour. I am offered drugs to derail the anxiety as I fall, but what do I lose if I take the edge off? And, if I don’t take the edge off, how will I get anything done or feel any joy or feel anything other than desperation?

45 days in to my new reality and I am bald. My signature long blond hair is gone. Catching a glance in a mirror is jarring, demoralizing. Why this overt humiliation now?

My living quarters are reduced to a single room generously loaned by dear friends to allow me easy access to treatment. They shower me with love, laughter and attention. My middle class American life has been whittled down to what will fit in a few bins. The bins taunt me with lessons of detachment. Must everything now be about preparing me to leave this world?

I have started to vanish. I can sense colleagues and friends, overwhelmed with the demands of their own lives, cutting me out of the day-to-day flow of work-based communication, so as “not to derail me from healing”. I crave updates about everything that formerly was my life. It’s been a mere 45 days and my erasure from the news of the day is underway. Does no one else see the irony of not distracting me from getting well? So many ironies at Stage IV.

There is so much more to acknowledge, like the bundles of love sent my way through cards, food and good reading material. As I free fall, kindness envelops me and cushions such a scary moment with light and possibilities. As we all struggle to find our best place in this very real drama please don’t fear making mistakes. Cancer is a mistake. Reaching out to me will never be a mistake.

I am lonely and scared. I am like a little Who from Horton Hears a Who — hanging on a thistle screaming out, “I am here, I am here, I am here.” Please hear me, love me and help me live this last phase of life as completely as possible. Just don’t rush my disappearance. Please.images

Marcy Westerling
Oregon • June 10, 2010

About marcy westerling

I am a long time community organizer with a passion for justice and founded the Rural Organizing Project in 1992. Derailed by a Stage IV Ovarian Cancer diagnosis in spring 2010, I have stayed in treatment since then. I am learning how to embrace livingly dying and hope that by starting a Phase One immunology clinical trial at UPenn in spring of 2013 I will have more time to find the sweet spots of thriving while terminally ill.

20 responses »

  1. Thank you so much for sharing your journey with us. It has been and still is instructive and inspirational. And I am soooooo glad you are still HERE!

  2. I hadn’t read this early piece before–it is so raw and real–and beautiful–just like you. And you are here! YOU ARE HERE! Still here and going strong after FOUR years with Stage FOUR. You are a miracle! Sending love and many blessings for many more years of joy and love.

  3. Wow, so glad you shared that early message, Marcy. I am here! We can all use the reminder that it is cancer that is the mistake, not our fumbled attempts to reach out. We need to run towards the sick and the dying, and this is such a great invitation to do so. Only now, who’s dying? All of us, I guess.

  4. So wonderful that your blogs are stilll coming in. What a journey you have shared with us. You continue to be held in golden white light.

  5. “I walk on tiptoes, still, always, but content. I am here, I am here, I am here!”
    So beautifully stated! I’m coming up on my first cancerversary as Stage IV (lung cancer) and I feel much the same way. I hope to still be reading your blog when I celebrate my fourth cancerversary. Congratulations!

  6. Just gorgeous. Thank you for showing your heartbreaking vulnerability and expressing it so beautifully. It takes me back to the days following my own diagnosis. This is what I felt but I couldn’t express it at the time.

  7. Marcy, so good to see you today at Marji’s celebration. You looked wonderful and it’s hard to imagine the battle you have been fighting for so long when I look at you full of life and love. Thank you for sharing this journey with us. Cheers, my friend.

  8. Wow Marcy. You are truly an amazing woman. Thank you for sharing such personal and intimate insights about your thoughts and feelings. I cannot imagine just how difficult this has been and it wrenches my gut reading about your experience.

    You ARE here! You touch our lives with your strength, tenacity, and determination to live life to the fullest. What could be a greater inspiration? I don’t know. Warm hugs to you.

    Holding you in spirit,
    Yvonne

  9. Oh my dear friend! Even in the depths of despair you are poetic, persuasive and positive. I cannot begin to understand what you are feeling but I remember a darling man, my dearest Spence, who, on the evening of the day he was diagnosed with leukemia, and we had cried and cried and cried and talked and talked and then just sat, stunned and cold, he turned to me, grabbed me by the shoulders and said, “I promise you this: This leukemia may kill me but I will not let it ruin my life.” I love you Marcy, and Spence would be so proud of you!

  10. I am grateful for you, your marvelous writing, and the way you live your life. A friend of a friend has just been diagnosed with peritoneal and ovarian cancer. May I put her in touch with you?

    xo judith

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