Flattening the fourth wall

Our irrepressible Kids’ Almanac columnist and friend Erica Chase-Salerno (Surprise Photography | http://surprisephotography.com)

Q) Erica, have you softened your attitude toward raisins since your cancer diagnosis? 

A) Nope!

Intro

My name is Erica Chase-Salerno, and I believe in the power of curiosity, possibility and love. Also, Stewart’s extra-thick mint chocolate chip milkshakes. I have circled the Sun 47 times, traveled the world beginning with my hometown Schenectady, New York, and I adore the genius humor of Tig Notaro. I have Stage IV breast cancer, which was diagnosed two years ago (like the football championship tradition, cancer staging employs Roman numerals – but without the halftime show). A former French teacher, I am currently a writer, healer and speaker. I share my life in New Paltz with a brilliant, handsome and hilarious husband, a very cool teen son, a super-talented tween daughter and a ridiculously loud small dog who has my heart.

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I remember feeling relief at my diagnosis: My disease has a name! I have treatment options! And, yes, I will die of this! With so many family members and friends experiencing invisible or even unnamed illnesses like Lyme disease or fibromyalgia, I grieve the agony of experiencing mystery symptoms. One advantage about starting my cancer journey with a terminal diagnosis is that I already know my death is coming; I’m just trying to slow it down. I have pursued holistic approaches, traditional allopathic treatments such as chemotherapy, and chocolate. The cancer just keeps coming! I obviously have delicious brains, bones and organs. This interview is to help give an inside look, to break the “fourth wall” in my experience with Stage IV breast cancer.

– Erica Chase-Salerno

 

Erica gets interviewed 

When did you first realize that this was not survivable?

At diagnosis.

When the doctors tell you that you are dying, how do they phrase it?

For me, it has been more about the way I frame the question: Do I qualify for Hospice? (prognosis of six months or less)? Or, how is my timing affected by this latest cancer spread?

What are some of the grittier things that happen during chemo that no one talks about (side effects, moods changing, body impact, et cetera)?

Have you heard this expression? If you know one person with cancer, you know one person with cancer. Everyone reacts differently. I have not had much, if any, nausea from chemotherapy treatments; I have had periods of fatigue; I sometimes see more impatience than before, in my interactions at home; I have lost and gained weight like going to the county fair – my wallet is lighter but my hips aren’t; aloe vera juice cures any of my constipation. I find that the most dramatic adjustment is my lack of appetite.

Is it embarrassing having medical staff always groping your boobs?

No, I’m so used to it. But when my liver mets flare up, the exam table looks like a complicated arm wrestle: I’m keeping a free arm to block my doctor from pressing too hard, Mike’s got a hold on that arm plus the other one and my doctor is trying to actually palpate my torso.

Why do you think this happened to you? Do you get pissed?

A gift of grace dropped into me while I was changing one day: “You Didn’t Cause This.” That was it. It freed me from ever carrying that thought again. From the very beginning, I have felt chosen, cherry-picked to receive this disease. I don’t get pissed about it. However, I get devastated hearing about pediatric cancer – including amazing Ana Dooley, who died earlier this year. What’s that about? Kids who don’t get a regular childhood, toddlerhood, babyhood – that’s where my anger resides.

What do you think will happen to you when you die? Do you think we just become worm food? Stardust? Do you believe in Heaven? Reincarnation?

My favorite speaker, Neil deGrasse Tyson, scientifically explains what happens when we die, and then he says this: “It is the knowledge that I am going to die that creates the focus that I bring to being alive.” At my passing, I believe my formless shape enables me to go, and be, anywhere and everywhere. I’ll be able to connect and communicate in new ways, including with my husband and kids, so keep an eye out for me! I have a burial dress in a galaxy pattern as inspired by Neil, intuitive healing sessions with my cousin and personal meditations: I feel guided to the stars. I was a hit at SUNY-New Paltz; who knew I’d get to wear it upright, during the recent eclipse?

What questions, sentiments, comments or advice from people about your condition really grind your gears?

I prefer to connect without your cures. I get it. I have gotten this wrong myself over the decades, and now feel sheepish about the therapies I sent to people impacted by autism and probably a million other things. My overtures came from love, but it was inappropriate; and honestly, it wasn’t loving to do it. I benefit from asking more questions than imposing my own experience, however well-intentioned. Never send me unsolicited information about anything. Unless Stewart’s is having a milkshake sale; then we’re good.

What are some cool things the community has done for you and/or your family?

My friend set up a neat healing circle in Hasbrouck Park in New Paltz. Once my brain tumors came on the scene, I am restricted from driving, so my kids and I have needed rides to soccer practice, appointments, GameStop, drama class – you name it. I have received countless meals, cleaning help, photo organizing, clearing out my basement and emotional triage. All of this is literally impossible to do without community support.

Do people get frustrated when you decline their help?

I am so committed to completing this respite (death) room – my salon that I call “Celestina” – exercising, meditating, setting up rides, writing, preparing meals, making errand lists, that my social life has nosedived. I so appreciate the offers to help, and my favorite method is using my blog to list events that members can sign up for. Another favorite is when a friend randomly texts me and says, “Here are a couple of days and times that I am free to help out this week, to do whatever/gardening/errands et cetera.”

Would you share some of your deeper fears?

When I think of dying, I feel like a traveler embarking on a marvelous adventure. When I think of goodbye-ing, I get sad thinking about missing my family and friends. I would be so sad if I were the only person to ever die, but none of us get out of this thing alive! I have lived long enough to welcome new godchildren while watching the older ones growing up; to see each of my own kids reach personal milestones. That I’ll never get my backhand right. Feeling like I’ll fade away and be forgotten isn’t something I carry with me, because that part isn’t actually about me. I feel increasingly detached from things that are not important like they used to feel, such as material possessions. I’m more about practicing patience for completion of my window installation, feeling joy listening to the Hamilton Mixtape, laughing while watching Best in Show for the zillionth time and taking fabulous naps.

Why are you driving around a golf cart?

Um, it’s a Kawasaki Mule ATV, thank you very much! We named her Moxie: inexplicably my daughter’s favorite beverage, which she describes as a combination of cough syrup and motor oil. After a spontaneous ride in my friend’s Mule – my first time! – my parents worked with Mike to surprise me with Moxie. Tooling around, taking out the garbage and schlepping stuff to the garage has now been transformed into fun!

How did you tell your kids?

My husband and I prepped root beer floats on the counter. We told them as soon as we got home from the diagnosis appointment, and we have done that ever since: They are always the first to know, so they never hear about my updates from someone else. I said that the reason I was attending so many doctor appointments and a hospital stay led to the information that I have Stage IV breast cancer, and that while I would live with it for a while, at some point, it’s how I would die. But that in the meantime, I was still very much here, and I’ll be taking very strong medicines that would probably lead to baldness and feeling sick. They asked how the staging worked, then our son said, “Can we have our root beer floats now?” while our daughter burst into tears. They don’t like to answer people’s questions about how I’m doing, so never ask them. Instead, speak to them about them. They have our permission not to discuss it unless they truly want to.

How have they responded? What are their attitudes?

My kids don’t exactly know cancer; they know daily life, which has included my cancer for these past couple of years. They appreciate that we tell them, even when some updates are boring or hard for them to hear. When my hair grew in before falling out again, my daughter said I looked weird with hair. Right? Plus, the timing is pretty good, because as they get older, our son takes longer showers than he used to, and since I’m bald, I don’t need shampoo, conditioner or shaving time! Hot water for all!

How about your folks?

My parents are very supportive, despite how brutal I think this dying process is for them. Same with my brother, sister, niece, in-laws, extended family on both sides et cetera. I am surrounded by love. I imagine if things were flipped, and I were my husband’s caregiver and witnessing his end-of-life experience, I’d be devastated and depressed.

Tell me about your husband’s attitude and support.

My husband is the smartest, handsomest and funniest person I know. He stands by me every step of the way, including every appointment, draining my chest catheters every three days when I had tubes for 18 months, and we just keep rolling. His responsibilities around here are massive, and he is incredibly patient every time I forget what we’re talking about in mid-sentence. He and I also have plenty of differences of opinion, such as my rewards to myself for cancer novelty (“Cancer rewards are not a ‘thing,’” he says, and I’m like, “I just said it, so now it’s a ‘thing.’”). Brain tumors for the first time? Get the skirt! Newbie at radiation? Yeah, I want that totebag! My lifespan just got reduced again due to the cancer spread? Ah, sandals on clearance: Don’t mind if I do!

Tempers run short sometimes; we are up very late just to get daily life done. This summer, I declared that was Our Last Fight. We have been together for 28 years, and I finally came to the realization that we are never going to change. We’ll adjust course, we’ll soften the edges of our irritations; but the deep stuff has been cultivated for a long time. We don’t need to keep arguing about “Fight #37” anymore. Most of our conflicts are, and have been, around my talking too much, and his talking too little. Been there, done that. Now I take clever workarounds like Fast & Furious movies, and our communication feels improved. I am witnessing how I’ve been holding anger in a punitive way, and I had no idea until trying the silent treatment again (he loves the silent treatment – keyword: silent). Just that awareness alone has made a huge difference in my life. I love him more deeply each day, I’m serious.

On writing.

I am the most fortunate person on the planet, being able to work with encouraging writers and editors who are the best in the business and fill my heart with “Yes You Can, Keep Going, Say More!”

Resources.

Know anyone with cancer? I strongly recommend the Reuner Cancer Support House in Kingston, which offers a variety of support groups, events, activities et cetera: www.hahv.org/hahv/cancer-support-house.aspx.

“Sparrow’s Nest of the Hudson Valley provides two meals, once a week, to the families of caregivers and children diagnosed with any type of cancer. Caregivers are defined as legal guardians of children, under the age of 18, living in the home. Caregivers and/or children diagnosed with any cancer that requires chemotherapy, radiation or surgery qualify. All recipients must live within a 20-mile radius of the charity’s Health Department-approved kitchen in Hopewell Junction.” This free program means the world to our family: https://sparrowsnestcharity.org.

Breast Cancer Options is located in Kingston, but it offers advanced breast cancer support groups around the area. And check out the conference in New Paltz on October 22: http://breastcanceroptions.org.

Interested in making special memories with your family by taking an all-expense paid trip for families with cancer? Check out the Jack & Jill Late Stage Cancer Foundation at https://jajf.org and Inheritance of Hope at http://inheritanceofhope.org.

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15 Cool things that happened in my life since my Stage IV breast cancer diagnosis*

15. All-inclusive Dominican Republic resort weekend from a contest my friend won for us.

14. Meeting personal heroes along this journey, thanks to many friends committed to making each surprise happen: Tig Notaro, Amy Schumer, Lin-Manuel Miranda, Dwayne “the Rock” Johnson and Okieriete “Oak” Onaodowan. These people inspire me to keep it real and embrace my whole being or just help get me out of bed in the morning.

13. Seeing Hamilton: An American Musical. Twice.

12. A whole paintball setup gifted to my son.

11. Intimate musical gatherings with musician friends.

10. Flying in a biplane at Old Rhinebeck Aerodrome.

9. Connections and friendships with some of my favorite medical caregivers.

8. Moxie, a Kawasaki ATV Mule my parents gave to us.

7. My personal acceptance of my end-of-life planning and completing ongoing preparations. Purchasing my natural burial plot is one of the most empowering things I have ever done in my life.

6. Boundless gratitude for family and friends who have availed themselves for support of every form: from meditations and prayers to cards and letters; to art pieces and thoughtful gifts; to energy healers who nurture my mind, body and spirit; to labyrinth, neighborhood, mountain and beach walks; to cleaning and organizing my living spaces in preparation for my transition.

5. Spending a life-altering week with my family, including my assigned equine guru Calvin, at the Red Horse Mountain Ranch in Idaho.

4. Drawing from the tab created for me at Karma Road in New Paltz to help feed my crew when I’m not up to it.

3. Proving to myself my own strength and resiliency during challenging treatments, impossibly painful procedures and long recoveries. My trust in myself is like Oobleck: both rock-solid and yet feels fluid.

2. Having my very own labyrinth in my yard, constructed using stones from our own property.

1. Encountering expressions of love that move me to tears.

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