Erica’s Cancer Journey: You ask, I answer

You:

Dear Erica,

1. You seem to be doing so much, and really really really living life to the fullest.

2. How do you feel most of the time?

3. What is the sick/okay/good ratio?

4. How much of your time is spent tending to the cancer versus being able to carry on with life?

Me:

1. I am so grateful I can still think, move and conduct myself independently, particularly toward chocolate. I am able to act on choices that many of my peers cannot, due to immobility, pain or discomfort. I have maintained an active, busy schedule for most of my life, so that’s not new with my cancer diagnosis. But what I continually find shocking is my lack of energy reserves. Determined to spend quality time with a friend and get at least one real outing in before returning my ski rental, I went cross-country skiing at Prospect Mountain Nordic in Vermont. I felt exhilarated and exhausted. Pre-cancer Erica would sleep it off and be bright-eyed and bushy-tailed the following morning. Current Erica needed not just one, but two rest days to recover.

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Am I living life to the fullest? I feel like I’m more living life to the joyest. I’m not trying to fill every moment of every day for the sake of aliveness. I try to live a life like a marathon, less like a sprint, focused on what brings me joy (except for when sour jellybeans were on sale, and a sprint may have happened in Aisle 3). 

2. Again, I am incredibly lucky to feel great most of the time. But because of that, I constantly forget that I have no energy reserves and plan my day without enough pauses to rest. And when I do remember to nap, I’m like a toddler, muttering to myself, “I’m not tired,” then fall asleep like six seconds later. Maybe sharing that here will finally get this notion into my noggin for good.

I enjoy going to the gym (where I run into some of you!), stretching, hiking, doing yoga and dancing sexily (probably more like spastically) with Mike in the kitchen. I get frustrated by how forgetful I am nowadays. I have a grocery list app on my phone, and in the time between the idea and activating the list, I forget what the item is that I want to add. I feel well, but these are deficits since my diagnosis: a combination of the effects of cancer, treatments and aging.

3. My sick/okay/good ratio is probably something like 1/9/90. What I am mostly sick of is not driving. Also, taking pills, whether prescriptions or supplements – especially large ones. If a pill has to be so big, why not make it something to savor, like (green apple) Jolly Rancher candy?

Fatigue and super-tight palms are my primary treatment side effects. It’s like my skin is too small for my palms; but the soles of my feet are fine. I read on cancer forums that some of my peers have the opposite, where their feet are in great discomfort, but their hands are okay. My doctor says that my palms are only like a Level 1, as opposed to people who suffer from blisters or raw, open wounds. My hair is growing back and I have gained weight, so while I still chill easily, it’s better than when I am too thin.

I get out of bed every day, swear I’ll go to bed earlier tonight, get washed up, eat a snack, take meds, do morning yoga, get dressed, eat breakfast or bring something with me if I’m headed to a meeting, gym or an appointment, take meds, do the thing and hopefully something from the to-do list, meds, take a nap, meds, stress about what to make for dinner, meds, and go to bed way too late.

4. My “cancer time” features a very large amount of waiting. Claude Debussy talks about music being “the space between the notes.” I feel like my appointments are tiny breaks between long stretches of waiting. A single appointment can easily take three hours from start to finish, due to delays in blood draw, blood results or waiting for the medical person to meet with me. My oncology appointments are currently once every two weeks. Brain radiation appointments and X-rays are clustered in frequency, depending on the treatment and recovery. Brain and body scans happen every three to four months. Chiropractor is twice per week. Therapy is once per week. Then there’s the setting up appointments and commuting back and forth. Did I mention the amount of time I spend in waiting rooms?

Then there’s the gray area: Is writing about cancer a part of “cancer life” or “real life”? How about organizing rides, populating my Legacy boxes for my husband and kids or finalizing end-of-life plans? My spiritual practices were active before my diagnosis, but now, more than ever, they feel more integral to my journey. So, does that make yoga, meditation, labyrinth-walking and journaling part of my cancer life or real life?

My real life is dotted with birdfeeders; reading poetry or Dave Barry; Facebook; firepit;  chores; Facebook; watching Schitt’s Creek, Drunk History, Bob’s Burgers or Standups; milkshakes; doing laundry but not putting it away; piecing together the puzzle of the kids’ summer camps; naps; (not) answering e-mails so I can reply more thoughtfully later, then completely forgetting to respond; lamenting about not driving; rediscovering that these five bumps on my dog are still not ticks; navigating eldercare; struggling with parenting.

I feel so well, and each day I’m cognizant that it doesn’t even matter. My hourglass continues to stream downward. I am very aware that every day, no matter how well-lived, brings me closer to my transition to death. I know that’s true for everyone, but my diagnosis has shortened my runway considerably. 

Honestly, my terminal breast cancer is one of the easiest aspects of my life right now. How crazy is that? But here are tough questions for me: Will I be here next season? At the next holiday? For my husband’s or kids’ birthdays? For my birthday? These reflections really help me to let go. My love for self, life and others, especially my kids and husband, has more space in it. It’s lighter as I increasingly release more and more of my inner rocks. My body may be a hot mess. But my essence, my true self? Only getting better.

I love your questions! Send them to me at kidsalmanac@ulsterpublishing.com. 

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.

There are 2 comments

  1. Janet Jullarine Butler

    I don’t know You but I grew up with Your Mom. Erica You are awesome. I pray for You and Your family and try to take inspiration from You. I worry about My own medical issues until I read about You and then I know that My problems are miniscule compared to what Your are going through. I am reminded here of something My Grandmother used to say, I complained I had no shoes until I met a man who had no feet. You are loved by so many and some You don’t even know and I have grown to Love You just by reading about Your journey. God Bless You Erica HUGS

  2. Kristen Steele

    Hi Erica,

    I know your folks through the Weathervane Theatre. They have given me the opportunity to follow your journey. A year and a half ago, I was diagnosed with something called Transverse Myelitis, a rare condition where inflammation on the spinal cord causes damage to the spinal cord. Three months later they added MS to my diagnosis. I sometimes feel unworthy when people tell me I’m an inspiration to them, because I feel like I am just doing what I need to survive. Perhaps you feel the same way. Having said that, I do find you to be such an inspiration! Facing such daunting outcomes, with such grace, humor and strength, really is a something I admire so much. I think you embody how we all should be living our lives, because in truth, no one knows the length of our days. Thank you for sharing your story, wisdom, and yes, inspiration with us all!

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