Category Archives: Cancer

Sunday Salon … Reading Elf

That’s a photo of one of my favorite ornaments on our tree and among the oldest. I remember receiving it as a child — I’m thinking it was a gift from my grandparents, because it’s the sort of thing my Mom-Mom would have bought me as a kid — but I can’t remember how old I was. Maybe 10? Anyway, I love it. We decorated the tree on Wednesday (I had a vacation day from work).

It’s been a lazy weekend, which is fine with me. Other than grocery shopping, I haven’t done much of anything. The Girl and I had plans to go to the art museum and a craft fair yesterday, but I just needed a quiet day. I planned our meals for the week and prepped some chicken tenders for the kids’ dinners — that’s about it.

We have a mere dusting of snow outside, but nothing compared to what others have gotten. I’m planning to be a reading elf today. I need to write a review of a book I think is going to be a huge hit early next year (can’t say much about it yet) and I have to spend some time with another book for an author interview I’m doing on Tuesday. It’s a nice feeling to be heading into 2018 with several freelance assignments on tap.

This week’s reading included Promise Me, Dad by Joe Biden which was everything I expected it to be — heartfelt, sad, real and honest. I’m planning a full review here on the blog soon, but one takeaway I had from this is while Promise Me, Dad is a memoir about a father’s (and a family’s) grief, first and foremost, it’s also a poignant and sobering reminder about how much we have lost as a country. While his son Beau was in treatment for aggressive glioblastoma, Joe was negotiating and managing world events in the Ukraine and Iraq. His recounting of those situations is like reading a national security brief. The depth of knowledge and understanding about the most volatile and complex regions, the familiarity and trust with global leaders … in a week that included the POSOTUS’s actions in regard to Jerusalem, it just underscores what should be apparent to any rational individual — that these fragile unprecedented times in which we live are being made even more so by the callousness and ignorance of the current regime.

And no, Joe Biden isn’t the author interview I have scheduled on Tuesday — how I wish! — but if I was so lucky, I know I’d be all full on Leslie Knope.

I could watch that Parks and Rec clip on a loop.  I love it.

Hope your Sunday is going well.

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goodbye, alison

Phipps Conservatory and Botanical Gardens (37)

A brilliant light left the world this morning with the passing of Alison Piepmeier.

Like many others, I’m saddened that brain cancer (fuck you, cancer) has taken such a gifted writer, passionate advocate, devoted mother and wife, compassionate educator, friend to many around the world, including many (like me) who she never had the opportunity to meet. I will miss reading her words on her blog and in the Charleston City Paper, which offers a lovely tribute today.

I will be forever grateful for how her beautiful life touched mine, if only for a too short time.

Peace and love, my blog friend.

 

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for alison, for her beautiful life

I’ve always been fascinated with the interconnectivity of our lives. You know, if _____ didn’t happen, we wouldn’t have ever met.  Or the way we’re all just six degrees of separation (or less) from everyone else.

Alison Piepmeier is that kind of person for me.  She’s a “blog-friend,” as she once said to me. (And I probably should say right now that I’m not the person to talk to if you believe people you know “on the Internet” and have never met aren’t the equivalent of real-life friends. Because after blogging for almost eight years now, I know firsthand how someone you’ve never met can make a difference on your life. I’ve seen it. Up close and personal, time and time again.)

Girl Zines - Making Media, Doing FeminismBack in 2010, I read a post on Girl w/ Pen about an intriguing book by Alison Piepmeier called Girl Zines: Making Media, Doing Feminism. I knew about zines, but I didn’t know their history and significance to feminism. Awhile later, I spotted Girl Zines on the shelves of the Newark Free Library in Delaware, read it, and wrote this review.  Sometime afterwards Alison discovered it, and we became connected through our blogs.

We almost met once. Back in April 2011, Alison visited Pittsburgh for a celebration of feminism and zines, at an event that was hosted at my current place of employment.  We weren’t living in Pittsburgh yet, but had just been there a week earlier to get acquainted with the area.

Connections and missed connections.


I continued to follow Alison’s blog and her writing, still remaining her “blog friend.”

Then, in 2013, a yearly checkup at the pediatrician for my boy prompted a simple question from the doctor.

“Do you ride your bike in the neighborhood, maybe with a friend?”

As I wrote in that post, published here almost exactly three years ago on July 23, 2013, my boy’s eyes went to the floor.

There was no mistaking the look, the loaded weight of that inquiry.

His silence was just a moment, fleeting – accompanied by a quick look to me in the corner where I’d fortunately looked up from my phone to catch his glance.

His blue eyes said it all.

I don’t know how to ride a bike. 

My bike is kinda small. I got it when I was 7. It has training wheels. That’s embarrassing. 

What do you mean, a friend?

“I don’t really do that,” he said to the pediatrician. 

I remembered this post from my friend Alison Piepmeier about her experience with what is now iCan Shine, Inc. (formerly Lose the Training Wheels). I remember thinking how much my boy would benefit from a program like that.

I remembered reading Alison’s post when we were on the cusp of moving to Pittsburgh, and checking to see if our new city had the same program. I remember the feeling of this is going to be okay when I realized that they did. I remembered being at The Children’s Institute (the program host of the iCan Shine Amazing Kids Bike Camp here in Pittsburgh) and mentioning the camp during a job interview I didn’t get.

I remembered my boy’s face in the pediatrician’s office.

I looked to see when the Pittsburgh camp would be taking place, knowing full well we may have missed it. Again.

And there it was. Registration ended six weeks [prior]. 

I emailed the camp director anyway.  Long shot … just thought I’d ask … know it’s last minute …

There was one spot left.


Who knows if I would have learned about the bike camp for people with disabilities, a national program of iCanShine, if it wasn’t for Alison’s involvement with them as a volunteer and her deciding to write a blog post about the experience?  Maybe I would have, but maybe not. Regardless, it’s an example — albeit simple and small — of how one person directly influences the life of another.

Because even though my boy doesn’t ride his bike much these days, I will never forget watching him and experiencing the sheer pride in his accomplishing something that so many parents take for granted. This was a gift, a glorious momentous milestone of celebration on what has not always been an easy road.

And it was because of Alison. My blog-friend.


I’m remembering and reflecting on all this tonight because Alison’s time here on Earth is, unfortunately, very short. She is nearing the end of a long battle with cancer, a fight she fought with the utmost grace, dignity and honesty imaginable and one that she shared in heartbreaking blog and Facebook posts with those of us who care about her. Her words, here in what may be her last column for the Charleston City Paper, are as moving and poignant as ever.

Through her books, her scholarly contributions to the field of feminism and disability studies, and her work as a professor of English and Director of the Women & Gender Studies program at the College of Charleston, Alison Piepmeier has touched many, many lives — especially those of her husband and her young daughter Maybelle.

We may have never met, but I will forever be grateful to Alison for that blog post that led to my boy being able to ride a bike and thankful that her life connected with mine, albeit for a short time.

Much love, peace, and comfort to you on this journey, my blog-friend.  You will be forever missed, until we connect again.

99 Days of Summer BloggingThis is post #52 of 99 in my 99 Days of Summer Blogging project.

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Best Books of 2016 …Thus Far (33/99)

Nineteen.

That’s how many books I’ve read so far this year. That may sound impressive — especially when the average American reads 12 books per year and 27% of Americans don’t finish a single book —  but in the book blogger world, 19 books in six months is verging on pathetic.

(I know, I’m too hard on myself. This is true.)

At the midpoint of this current trip around the sun, I like to reflect on the reading year to date by sharing my favorite books of 2016 thus far.  Sometimes there’s a standout book that is a clear front-runner and sometimes there isn’t.  This happens to be a year when there is — and it’s a book that has landed among my all-time favorites.

When Breath Becomes Air

When Breath Becomes Air by Paul Kalanithi
Paul Kalanithi, a brilliant and compassionate neurosurgeon who, at 38, was diagnosed with lung cancer just as he was on the verge of completing a 10 year residency program, has much to teach us in his posthumously published memoir. When Breath Becomes Air is more than the journey towards one’s own lightbulb, a-ha, now-I-know-what-life-is-all-about moment of revelation that often accompanies a serious illness or tragic event. It’s about what it means when everything you have worked toward and planned vanishes at the precise moment when you are on the cusp of realizing all those dreams and aspirations.

Scorpion Tongues

Scorpion Tongues: The Irresistible History of Gossip in American Politics by Gail Collins 
This presidential election campaign is like nothing we’ve seen before … at least in our lifetimes. History tells a different story — and many of them — of political scandals that rival what we’re seeing today.

The Art of Description

The Art of Description by Mark Doty
Written by a true master of the craft, this is a fantastic book exploring how we use words to place the reader in the heart of our work.  Reading this is like taking a class with Mark Doty himself (something that is on my literary bucket list).  Until then, we have this gem.

Shades of Blue

Shades of Blue: Writers on Depression, Suicide, and Feeling Blue, edited by Amy Ferris
An astonishing anthology edited by Amy Ferris (her Facebook posts are gorgeously written and full of inspiring kick-assery), the emotions in these essays are raw and real. These are personal, true accounts of people who have struggled with depression, suicide (either their own attempt or that of a loved one) and mental illness. As a society, we need to do a better job of telling our stories in order to help break the stigma that fosters shame and secrecy.  Shades of Blue is a damn good place to start listening.  Don’t be surprised if you find shades of yourself between these pages.

The Best American Essays 2015

The Best American Essays 2015, edited by Ariel Levy
A fantastic collection of essays by some of our best writers, including Hilton Als, Roger Angell, Justin Cronin, Meghan Daum, Anthony Doerr, Margo Jefferson, David Sedaris, Zadie Smith, Rebecca Solnit and several others.

Boys in the Trees

Boys in the Trees: A Memoir by Carly Simon
Carly Simon’s songs are ones that make her fans — of which I am one, very much so — feel as if we know her.  Here, we learn for the first time the stories behind the lyrics that we’ve been singing for years. It’s an eye-opening, often surprising, sometimes heartbreaking look at family dynamics, coming of age, betrayal, sexuality, motherhood and the publishing and entertainment businesses.

So there you have it.  The best books I’ve read this year (so far).  It’s interesting that there isn’t any fiction on this list.  This seems to be shaping up as a year dominated by nonfiction, especially essays and memoir.

How is your reading year going? Is there a standout book (or books) that will be among your favorites this year?

99 Days of Summer BloggingThis is post #33 of 99 in my 99 Days of Summer Blogging project. 

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becoming wise, in the body of the world (31/99)

You know I’m a podcast junkie.  One of my favorites is “On Being” with Krista Tippett. I don’t always catch every episode but I enjoy her conversations immensely, even when I’ve never heard of her guest. (Those can be some of my favorite episodes.)  I like how Krista  — she carpools with me to and from work, so we’re on a first name basis — asks thoughtful questions that produce insightful answers. Her voice is so resonant and calming, and I just feel better after listening to her, especially after a long day.

She launched “Becoming Wise” in March, a new podcast based on her recently-published book Becoming Wise: An Inquiry into the Mystery and Art of Living.  (I have this checked out from the library now and it’s among the books I really want to get to this holiday weekend.)  At an average of 10 minutes each, “Becoming Wise” is much shorter than “On Being” which makes it easy to catch up on several at a time, as I’m doing (although not in chronological order).

Episode #15 of Becoming Wise (“I Feel, Therefore I Am”) featured playwright, performer, and activist Eve Ensler.  Now, I happen to think Eve Ensler is one of the most powerful and influential women on the face of the Earth. Her work resonates deeply with me as it has a significant personal meaning to my life.

In this episode of “Becoming Wise,” Eve echoes the themes of many of Krista Tippett’s guests as she talks about being connected with the world.

“How in our daily lives are we connecting with ourselves and everything around us? Because that’s where real, energetic transformation comes from.”

In the Body of the WorldIt’s a theme that Eve explores in detail with her memoir In the Body of the World, which is such a powerful book. (I listened to this on audio two years ago and it has stayed with me ever since.) It’s described as “a visionary memoir of separation and connection – to the body, the self, and the world.”

That is an understatement.

This is a cancer memoir and as one would expect from Eve Ensler, it kicks cancer’s ass. It is honest and raw. (Again, this is the creator of The Vagina Monologues we’re talking about here. You want bravery and telling-it-like-it-is?  Eve Ensler, poster child, right there.)

From the publisher’s description:

Playwright, author, and activist Eve Ensler has devoted her life to the female body—how to talk about it, how to protect and value it. Yet she spent much of her life disassociated from her own body—a disconnection brought on by her father’s sexual abuse and her mother’s remoteness. “Because I did not, could not inhabit my body or the Earth,” she writes, “I could not feel or know their pain.”

But Ensler is shocked out of her distance. While working in the Congo, she is shattered to encounter the horrific rape and violence inflicted on the women there. Soon after, she is diagnosed with uterine cancer, and through months of harrowing treatment, she is forced to become first and foremost a body—pricked, punctured, cut, scanned. It is then that all distance is erased. As she connects her own illness to the devastation of the earth, her life force to the resilience of humanity, she is finally, fully—and gratefully—joined to the body of the world.

Here’s a quote from In the Body of the World that I loved.

“Love was something you succeeded or failed. It was like a corporate activity. You won or lost. People loved you and then they didn’t…. I had failed at love or the story I had bought about love… I was reaching at love , but it turns out love doesn’t involve reaching. I was always dreaming of the big love, the ultimate love, the love that would sweep me off my feet or ‘break open the hard shell of my lesser self’. The love that would bring on my surrender. The love that would inspire me to give everything. As I lay there, it occurred to me that while I had been dreaming of this big love, this ultimate love, I had, without realizing it, been giving and receiving love for most of my life.

The life I was living was a life of love.”

Seems like it still is.

99 Days of Summer BloggingThis is post #31 of 99 in my 99 Days of Summer Blogging project.

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Book Review: When Breath Becomes Air by Paul Kalanithi

When Breath Becomes AirWhen Breath Becomes Air
by Paul Kalanithi
Random House
2016
228 pages

I read a lot of memoirs. A lot. My choices tend to skew on the sadder side of life and if it involves death or some tragedy, chances are it’s going on my must-read list.  These are often the books I’m still thinking about weeks and months after I’ve finished them.

In The New York Times (1/6/2016), reviewer Janet Maslin writes that “finishing this book and then forgetting about it is simply not an option. There is so much here that lingers, and not just about matters of life and death.”

She’s absolutely right.  Paul Kalanithi, a brilliant and compassionate neurosurgeon who, at 38, was diagnosed with lung cancer just as he was on the verge of completing a 10 year residency program, has much to teach us in his posthumously published memoir. When Breath Becomes Air is more than the journey towards one’s own lightbulb, a-ha, now-I-know-what-life-is-all-about moment of revelation that often accompanies a serious illness or tragic event. Indeed, many memoirs cover similar ground in inspiring ways — but this one is, somehow, very different.

It’s about what it means when everything you have worked toward and planned for 10 years vanishes at the precise moment when you are on the cusp of realizing all those dreams and aspirations.

“My life had been building potential, potential that would now go unrealized. I had planned to do so much, and I had come so close. I was physically debilitated, my imagined future and my personal identity collapsed, and I faced the same existential quandaries my patients faced. The lung cancer diagnosis was confirmed. My carefully planned and hard-won future no longer existed. Death, so familiar to me in my work, was now paying a personal visit. Here we were, finally face-to-face, and yet nothing about it seemed recognizable. Standing at the crossroads where I should have been able to see and follow the footprints of the countless patients I had treated over the years, I saw instead only a blank, a harsh, vacant, gleaming white desert, as if a sandstorm had erased all trace of familiarity.” (pg. 121)

This examination of identity and purpose is, ironically, at the nucleus of Kalanithi’s calling as a neurologist.

“While all doctors treat diseases, neurosurgeons work in the crucible of identity: every operation on the brain is, by necessity, a manipulation of the substance of our selves, and every conversation with a patient undergoing brain surgery cannot help but confront this fact…. Because the brain mediates our experience of the world, any neurosurgical problem forces a patient and his family, ideally with a doctor as a guide, to answer this question: What makes life meaningful enough to go on living?” (pg. 71)

“I had started in this career, in part, to pursue death: to grasp it, uncloak it, and see it eye-to-eye, unblinking. Neurosurgery attracted me as much for its intertwining of brain and consciousness as for its intertwining of life and death. I had thought that a life spent in the space between the two would grant me not merely a stage for compassionate action but an elevation of my own being: getting as far away from petty materialism, from self-important trivia, getting right there, to the heart of the matter, to truly life-and-death decisions and struggles … surely a kind of transcendence would be found there?” (pg. 81)

These are such powerful observations — ones that resonate so much with me lately, which is part of why I think I loved this book so much.  It’s both reassuring and refreshing to know that there truly are doctors who think and feel so deeply.  In my 47 years, I’ve been lucky to know a few doctors with this level of knowledge and sensitivity, but, sadly, there haven’t been many. A doctor with a phenomenal bedside manner is special, indeed.

“As a resident, my highest ideal was not saving lives — everyone dies eventually — but guiding a patient or family to an understanding of death or illness. When a patient comes in with a fatal head bleed, that first conversation with a neurosurgeon may forever color how the family remembers the death, from a peaceful letting go (“Maybe it was his time”) to an open sore of regret (“Those doctors didn’t listen! They didn’t even try to save him!”) When there’s no place for the scalpel, words are the surgeon’s only tool.” (pg. 86-87)

Read that last line again.  When there’s no place for the scalpel, words are the surgeon’s only tool.

And those words? They matter. They matter so goddamn much.  They’re what we remember when we get the phone call, the test results, the diagnosis, the prognosis.  That moment is weighted; everything that comes after hinges on how that news is conveyed.

The title When Breath Becomes Air comes from Baron Brooke Fulke Greville’s “”Caelica 83.” (In addition to a brilliant physican, Paul Kalanithi was a hell of a well-read guy.)

“You that seek what life is in death,
Now find it air that once was breath.
New names unknown, old names gone
Till time end bodies, but souls none.
Reader! then make time, while you be,
But steps to your eternity. “

We’re all mere steps to our eternities, Kalanithi writes.

“Our patients’ lives and identities may be in our hands, yet death always wins. Even if you are perfect, the world isn’t. The secret is to know that the deck is stacked, that you will lose, that your hands or judgment will slip, and yet still struggle to win for your patients. You can’t ever reach perfection, but you can believe in an asymptote toward which you are ceaselessly striving.” (pg. 115)

So how do we go on with our lives in the midst of such uncertainty which can either propel us forward or paralyze us? Kalanithi offers his perspective.

“Maybe, in the absence of any certainty, we should just assume that we’re going to live a long time. Maybe that’s the only way forward.” (pg. 162)

Undoubtedly, Paul Kalanithi impacted many lives as a neurosurgeon.  He would have — no, should have — had the opportunity to touch many more for many, many more years than the 38 he was given. And while he should still be here, enjoying his wife and young daughter and a successful career, his words will change countless lives.

Highly, highly recommended. 5 stars out of 5.  This will likely be the best book I read all year.  

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Weekend Cooking: Life on the Low Iodine Diet. Again.

Weekend Cooking - New

Two years ago, The Husband was diagnosed with thyroid cancer. It was one of those life-changing experiences – and, if I’m being honest, not necessarily for the better.

As treatments go, however, thyroid cancer often involves radioactive iodine therapy which requires that the patient follow a low iodine diet for 1-2 weeks prior. In The Husband’s case, his endocrinologist has him go through a round of this before his annual scan to see if the cancer has returned.

This is our third go-around of this.

The Husband is currently on Day 4 of the low iodine diet (or, what we call the Thyroid Cancer Diet in our house) which will last for another six days. For a vegetarian, it’s rather restrictive. I’ve written about this before, but basically the diet permits fresh or frozen fruits; fresh or frozen vegetables; fresh meat (which, obviously, we don’t eat); sugar/jelly/honey/maple syrup; a limited amount of basmati rice and pasta; matzoh; unsalted nuts; oils; herbs and spices; egg whites; and sorbet (as long as it doesn’t have Red Dye #3.)

That means no bread or flour, no dairy products, no eggs, no salt, no food coloring … you get the idea.

Good times.

Let me be absolutely clear: as cancer treatments go, I fully understand that compared to chemo and radiation, this regimen is a piece of cake. (No baked goods allowed, either.) I get that. It’s just that when you have a household of four people, each with their own picky eating quirks, cooking with these additional limitations is … challenging. For dinners, I try to match our meals as closely as possible, even with the diet.

I usually start off with all good intentions, planning meticulously. (As I’ve written before, if you or someone you know have to be on the low iodine diet, the Thyroid Cancer Survivors’ Association (ThyCa) has a free downloadable cookbook in .pdf form that has been a godsend for recipes and helpful hints.)  I also have the approved ingredient list on my phone so I have it with me if I am making a quick stop at the store and need to check a product.

This time around, I intended also to blog each day of the diet, in hopes of maybe being a resource to someone else, but that didn’t happen. I’ll try to recreate what I’ve been making for The Husband here and hopefully continue along with posts into next week.

Day 1 (Wednesday)
Breakfast:
egg white omelet
black coffee

Lunch:
matzo crackers with unsalted peanut butter
apple
banana
baby carrots
Sprite

Aftenoon snack at work:
small pear

Dinner:

Low Iodine Diet - Fajitas

Fajitas –
A recipe from the ThyCa cookbook. I sauteed some onions, green peppers and corn in olive oil, then put it on a soft corn tortilla with basmati rice and topped with tomatoes.

Day 2 (Thursday)
Breakfast:
matzoh with unsalted peanut butter and jelly
black coffee with a small amount of cashew milk

Lunch:
Leftover rice and veggies from last night’s dinner
apple
baby carrots

Afternoon snack at work:
small pear

Dinner:
Pasta with chopped tomatoes, olive oil, garlic and pepper

Day 3 (Friday)
Breakfast
oatmeal with maple syrup
black coffee with a small amount of cashew milk

Lunch
I’m actually not quite sure what The Husband packed for lunch; probably some combination of fruit, baby carrots, and crackers.

Dinner
Since I was going to be up late on Thursday night watching “Parenthood,” I made a version of homemade marinara sauce with fresh tomatoes in the crockpot. It was just olive oil, garlic, about 2 lbs. of chopped Roma tomatoes, a pinch of sugar. Simmered on LOW for 5 hours. The Husband had this with leftover pasta from Thursday night.

Day 4 (Saturday)
Breakfast
oatmeal with maple syrup
black coffee with cashew milk

Lunch
matzoh with unsalted peanut butter and jelly

Dinner
Confetti Rice - Low Iodine DietA simple version of fried rice with onion, corn, and peas. I added some sliced chicken to The Girl’s meal.  This is one of our favorite meals on the diet. So easy. We’ll probably see this at least once more, I’m guessing.

Six more days to go.

Weekend Cooking is hosted by Beth Fish Reads and is open to anyone who has any kind of food-related post to share: Book (novel, nonfiction) reviews, cookbook reviews, movie reviews, recipes, random thoughts, gadgets, quotations, photographs. If your post is even vaguely foodie, feel free to grab the button and link up anytime over the weekend. You do not have to post on the weekend. Please link to your specific post, not your blog’s home page. For more information, see the welcome post.

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