I am honored to have been invited to speak at the WMC Health Alliance National Cancer Survivors Day 2018 celebration in Kingston. Since last week’s heart effusion cancer curveball landed me in the hospital and prevented me from attending, some friends from my support group read my words for me. Thank you, Robin, Tom, Jim and Benji!
Welcome! My name is Erica, and I am on a journey of Stage IV breast cancer.
Let’s see who is here tonight with a show of hands: Who has cancer right now? Who has had cancer in the past? Who has been touched by cancer in other ways?
I find that cancer asks a great deal of me, and gives a great deal to me. Can any of you relate to that experience? Hmmmm, maybe one more than the other? Does it take more than it gives?
Maybe we can go a little deeper: Is cancer a “head” experience or a “heart” experience? Let’s explore.
As you see on the tables, you are invited to fill in some words about your cancer journey that begin with the following letters: C…A…N…C…E…R.
Now, here’s what I came up for the letter C: Celebration.
I am celebrating Cancer Survivors’ Day! Being here right now, connecting with you – something I would have otherwise taken completely for granted before cancer. I celebrate the love I feel from others who are more open with me about their feelings. I celebrate the healing approaches that help slow down my cancer, or give me moments of relief. I celebrate my friends’ remissions, or release from pain. A happy scan, a successful blood draw. A birthday or other meaningful experience I was fortunate to witness or attend.
Now, how about the letter A? Adaptation.
We roll with the punches. We get knocked down and get up again. Who here has had a Plan A? And…then suddenly a Plan B? From crazy timing of tests at the hospital (“I thought it was at 9 o’clock?”) to surprise side effects (“Why am I so tired…Zzzzzzzz…”).
Beethoven wrote, “Yet it was impossible for me to say to people, ‘Speak louder, shout, for I am deaf.’ Oh, how could I possibly admit an infirmity in the one sense which ought to be more perfect in me than others, a sense which I once possessed in the highest perfection, a perfection such as few in my profession enjoy or ever have enjoyed?”
We are learning how to use canes, catheter bags, wheelchairs, drains.
Even in the beginning, did anyone here honestly expect a cancer diagnosis in yourself or a loved one? To actually touch your life so directly? We are living and evolving; we are constantly adapting to our circumstances. Sometimes numbers go up (no bueno), sometimes they go down (yay!).
One way I handle not-so-good test results is a silly competition with my friends in my support group. I compete with my prostate cancer friends for Who Has the Highest Number, which makes me laugh just to think about – a fun way to deal with the hard realities of my experience. We are constantly adjusting our worldview of reality to the current, often constantly changing state of our bodies.
Let’s look at the letter N: Navigation.
Who here has spent some time online searching for information as you make treatment choices? Me too. Has anyone else here received very pushy input about how to heal your cancer? Have you had to navigate childcare, eldercare, pet care, insurance, meds, doctors, additional opinions, loss of certain abilities? I can no longer drive, and it’s brutal.
How about just navigating waking up: What kind of day am I up to having? We are constantly making maps for things that either never existed for us before, or need to be handled differently.
C.S. Lewis says, “The future is something which everyone reaches at the rate of 60 minutes an hour, whatever they do, whoever they are.” So, what is our True North our maps are based on as we navigate our future? Self? Spirit? Head? Heart?
The more problems I negotiate, the more trust I have in myself. We are a strong people, handling so much change every day.
Another letter C: I have chosen…Communication.
How do we connect with others during this cancer chapter? I am constantly in conversation with medical personnel, insurance, support groups, Internet forums, family and my community. I choose what to share, and what to hold privately.
What are some of your letter C words? [1-2-3 volunteers] Yes, we seem to have lots of words to describe life with cancer. Thank you.
For the letter E, I choose Exclamation, as in exclamation point: things I feel strongly about.
I have completely gotten away from encouraging anyone I know (or don’t know!) from pursuing a particular style of healing treatment. I used to send stories and “articles” about autism to my friends with children on the spectrum, never having asked them specifics about their situation. I no longer do that, and am offended when others do the same thing with me around cancer. I never knew enough about that person’s situation, let alone about autism itself. No one knows my situation as well as I do. I need your support, not your advice.
Have you ever done that: helped someone in a way that was intended to be helpful but really out of your lane? Or been on the receiving end of it? How do you feel during or after those exchanges?
Exclamation can also be our push to do something we’ve never done before. “Make the most of yourself by fanning the tiny, inner sparks of possibility into flames of achievement,” according to Golda Meir.
What are some E words that touch you in your oncological explorations? [1-2-3 volunteers] We feel strongly about many things! Thank you.
R leads me to a special, and our final, word: Revelation.
Revelation is defined as a surprising and previously unknown fact, especially one that is made known in a dramatic way. “Head.” Revelation is also defined as the divine or supernatural disclosure to humans of something relating to human existence or the world. “Heart.” I have experienced both along my cancer journey.
Head: I learned that cancer is engineered to colonize. It’s not personal. It’s just what it does – kind of like humans.
Heart: I received a direct message from my spirit guides that I Did Not Cause My Cancer. And that was that. I wasn’t in a meditative state; I was getting dressed. The awareness just arrived through grace.
Revelation is the last book of the bible: Apostle John’s reflections in the doorway of things to come. Alan Alda says, “Doorways are where the truth is told.” At some point, we all find ourselves in the doorway from this earthly plane to the next. Some of us are closer than others.
“May all that has been reduced to noise in you become music again.” This place, this right here, this right now: What a rich place to discover, wonder, receive new insights and perspectives; to access ancient wisdom, fresh awakenings; to release burdens we need no longer carry.
The gifts of new ideas and new understandings since diagnosis: Revelation. Revelationssssssss.
I invite you to reflect on the Revelations you have experienced in your own cancer journey, including as a support or advocate for others, through…
Celebration
Adaptation
Navigation
Communication
Exclamation
Revelation.
We are survivors; we are Head On and Heart Strong!
Love, Erica
Kids’ Almanac columnist Erica Chase-Salerno was diagnosed with Stage IV breast cancer in the Summer of 2015. To read more about her experience, visit https://hudsonvalleyone.com/tag/ericas-cancer-journey.
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