Friday, April 29, 2016

WHAT GETS YOU THROUGH


I've been thinking a lot about what gets us through times of illness, loss, and personal crises. In reading this book aloud to my husband--Don't Panic: How to Keep Going When the Going Gets Tough, by Maureen Pratt--I am reminded of how we survived crises as a family and how those strategies can help me crawl through the remaining weeks of chemo. This is my open letter summarizing what I have learned, and I hope it can help anyone in crisis or starting chemo.

Rituals:

--We had a number of rituals when the kids were younger: take-out pizza on a quilt in front of the TV, watching movies. No problem if you dropped things or got grease on the quilt. The looser rules around eating and the pleasure of casual pizza took us through some difficult days.

-Another ritual we had was cosying up on the sofa with big bowls of ice cream to watch "The Simpsons."  Crazy laughter, Bart, and the sweet fat of desert helped us through one child's serious illness.  It's the little things that get you through.

What things which worked in the past can you apply to your life now; what can you let go of?

Small Tasks:

As my chemo got harder and my ability to bounce back (hell, I'd settle for crawl back) took longer, I worried about how little I was contributing to the household. I used to be the energizer bunny: meeting friends, shopping, gardening, attending church, writing, cooking, and more. No longer possible! I learned to set the timer for 5 or 10 min. and plan on doing only one task. I could perch on a stool and scrub out the sink, or peel carrots to steam for supper. I could begin a blog post while sitting down, not worrying about finishing. When you measure out your life in teaspoons, this is a source of confidence. Forget big accomplishments and who you used to be: set the bar way, way lower.

Can you allow yourself the mercy of doing and expecting less?

Instagram & Pinterest:

--I am not kidding: social media got me through hard days, even when in bed after surgery. I could scroll through my iPhone, answer emails, look at new photos, and keep up with friends on Facebook. This kept me connected to my world. And when I was able to creep around my kitchen and make rice pudding to die for, I could post it on Instagram and feel proud.

--On days when chemo addled my brain  (some research from the University of Rochester indicates that "chemo brain" may occur because the toxic chemicals may shut down production of new brain cells), I could curl up under a blanket and look at Pinterest. It kept hope for the future alive--someday I'll make that cilantro/lime chicken; someday I'll toss a scarf around my neck like Kate Middleton; someday I'll paint again. Sherry Terkel complains about social media not being "real contact," but when you have dropped out of your life and world, it damn all helps.

Can you let go of the opinions of others, even experts, to craft a reduced life which works and brings some joy?

My Family:

--People don't always know how much tiny interactions mean to us. When my second adult child texted me about trying to feed their cows apple slices by hand, I got a good laugh. At night, if nausea made it impossible to sleep, I knew I could text this dear person, for they would be awake at 2:00 a.m. A response in the dark night made me feel less alone.(I was not about to wake my husband!)

--When my son texted me pictures of their races (both he and his wife are ardent marathoners), their cute dog, and the latest delivery from Blue Apron, this took my mind off my troubles. They had lives, and one day soon I would too.

--My two brothers stayed connected with me in ways which warmed my heart and sustained my soul: they emailed, phoned, sent gifts, visited, and assured me of their support and love.

--I can't say enough about my dear husband of almost 49 years. When we drove down to the hospital for my infusions, he could always make me laugh. Or he'd slide the Mariah Carey CD in so we could sing, "Jesus! Jesus! Oohhh, What a Wonderful Child!" Don't be afraid to rest on the support of your close loved ones; they are a raft in hard times.

Can you ask family to contact you more, telling them how much it lifts your spirits?

God:

Those who know me know I pray a lot. Sometimes those prayers resemble Annie Lamott's, helphelphelp and thankyouthankyouthankyou.  I used a variety of prayer tools during surgery and chemo:

--The Rosary was really helpful when my brain was clouded by chemicals. The serene, known repetition of the Hail Mary's grounded and calmed me.

--Any daily scripture readings can be marvelous. I used "Give Us This Day," Daily Prayer for Catholics. When I couldn't get to church, I could follow the readings and feel I was still part of the liturgy and worship.

--SacredSpace.ie is an internet site run by the Irish Jesuits which offers readings, reflections, meditations, and commentary. Really useful.  If you don't have one already, developing a daily habit of reading Scripture and praying is a life raft.

Can you take the first step towards beginning a prayer life, even if you are not quite sure about God? Helphelphelp is a good place to start.

Nature:

Though all the nature you may see is a plant in the window or pictures of the Brooklyn Botanical Garden on your iPhone, go for it. Recent research in the NYTimes Well Blog shows that even looking at photos of greenery can boost your mood and connection. We were made, after all, to inhabit a garden.

--When I recently hit bottom, feeling that health was a never-to-be-attained state of being, I kept walking with a cane on our deck. Probably the chemo and some depression made me sense I was "seeing through a glass darkly," and no face-to-face either, sister. I peered through a dusty window at the world and felt--nothing. Then I looked at the stone wall below at a chipmunk frisking about, tail twitching. For a moment it looked up at me as if to say, "WTF? What is this huge thing?" Then it whisked between two stones, disappeared, and somehow the glass broke, the dusty panes crumbled, and I felt joy again. Praises be.  Never underestimate the power of something living to bring you back to life again.

Make time to be outdoors, even if that means sitting still on a chair and watching the leaves come out or the birds perch in the branches.

Friends:

Many friends from church and my Writers' Group were delicate and respectful about being in touch with me, usually by email. By keeping in touch, my writer friends gave me the sense I had not actually dropped through a stage trap door and disappeared. (You know who invented this nifty device? The Jesuits!)

--Phone calls were welcome but even now, anything longer than 10 minutes exhausts me. I don't have the spoons for more. If you don't know this apt metaphor for chronic illness, check out:  www.butyoudontlooksick.com. Try connecting to the community of "spoonies" who understand what you are going through and can offer helpful hints re. makeup, wigs, energy loss, and recovery.

Consider that having cancer is actually a form of disability, and you need to care for yourself as if you were disabled.

And Last But Not Least, Amazon.com:

I am lucky to be married to a still-working man with a decent salary, so I was able to order many chotchkies on my favorite site.

--This ranged from: eyebrow tint gel; good creams for chemo-stressed skin; v-necked shirts for chemo infusions; black church hats to make me feel dashing; fuzzy warm tights for hard days; and Kindle books of a gentle nature, like the "Miss Read" books.  Be protective of what you read and watch: I found any TV violence made me ill, and I stopped reading the NYTimes for awhile.

It took me time to learn that what I put into my mind affected how my body felt. Surround yourself with nourishing things for now.

You will have your own strategies for coping:
you have more inner resources than you know, and going through a crisis will strengthen you. It is not fun, but you will be changed forever. And, as a humorous minister friend of mine used to say, "Here comes another f...ing blessing!"

Wednesday, April 13, 2016

YOU KNOW YOU'VE GOT CANCER/CHEMO WHEN.....

I'm compiling a list. Lists are good when your mind is shredded, your body floppy, and you are looking for some order and control in your life--something in short supply when going through chemo. As my favorite Franciscan priest, Richard Rohr, says, "Suffering is whenever you are not in control." Check!

So here's my list, a way of ascertaining that you are in the midst of this struggle, just in case you didn't know:

--Your favorite time of day is bedtime when you can take off your makeup and false eyebrows, pull off your wig, and get into pajamas. Ah....

--You have started to reread your Kindle books again even though you just reread them 3 weeks ago. For me that includes Elly Griffiths' "The Crossing Places" (English forensic detective) and Deborah Harkness's "Discovery of Witches."  I like the known right now; I don't want any surprises. My life already has too many of them.

--On the vanity in the bathroom you have side by side: nausea pills, stool softener, Imodium, and laxatives. Do NOT take them all at the same time!

--You discover that following Kate Middleton on Pinterest is utterly absorbing, and small exclamations of delight escape at each new fabulous outfit and trendy hat. I don't even like hats, but I am comforted by following a happy lady who seems to have it all together, and, at least for now, is unmarked by tragedy.

--You make a list of friends and family to call one day, but it only has two names on it because that is all you can decently manage without babbling and falling into a fugue state.

--You schedule visits with folks very carefully because two-three a week is about all you can do. Chemo/cancer is a vast energy drain which makes ordinary social occasions--like meeting a friend for a cappuchino--difficult.

--You catch a glimpse of your bald head in the mirror in the morning and start back. "Say it ain't so! Is that me?" You think you are getting used to it but---My husband assures me my head is "elegant" but all I can think of is my strange resemblance to an opossum.

--You pour a glass of lovely chilled Chardonnay (hopefully "Toasted Head") one night and realize after one sip that you'd really prefer water or Gatorade instead. Your taste buds have changed.

--You try and roll a joint (courtesy of legal MM) and realize your education is seriously deficient. The weed falls out, the paper unrolls, and I singe what's left of my eyebrows trying to keep the joint lit. Husband goes on YouTube for tips on how to roll joints, which they cunningly call, "Herbal Infusion." My kids think this is all simply hilarious.

--You think you are doing fine, keeping up your spirits and courage, and then one day find yourself with tears streaming down your face.  "I want my life back," you sob.

--These are just a few of the markers I've found in the last months. You, or someone you know and love, might have different markers. But what we share is this deep sense of vulnerability; a yearning for our lost life "before"; and a fierce hope that one day all will be well even though you know that your life has changed and you with it.