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Which little things make your treatments bearable?

January 6, 2010 cancer, survivorship 2 comments

Kairol Rosenthal, author of Everything Changes, blogged today about this question:

Most of us need insurance, money, and love to make it through cancer.  But what about the smaller, less conspicuous items that helped you through the medical and physical challenges of surgery, chemo or radiation?

And then she asked this question, and made this request:

Pick your top five items (or more if you’d like) and leave them in the comment section, noting the kind of cancer you have and what your treatment or surgery was.  Don’t worry if someone already mentioned one of your favorite items – duplicates only reinforce how necessary and helpful the item is.

If  20 people give us their list of five, we’ll have over 100 helpful hints for the next person who is in our shoes.  So, forward a link to this post to other friends in the cancer community and ask them to contribute their top five too.

My five (well, okay, seven) were:

- my cell phone
 – my PDA (to take notes, play games, keep my contact numbers at my fingertips)
- (already mentioned and absolutely essential!) my iPod nano loaded with audiobooks and great playlists. In fact, I splurged on my first-ever iPod in 2004 when dx’d, to help me get through the 7-10 hour long Folfox/Avastin infusions.
- a very small backpack to keep everything close to my bed hanging off the bed rail
- an extension cord – I think it was around 6 or 9ft. long. Compact, but just enough to be able to bring electricity from the wall plugs to my bed, so that i could plug in all those small electrics ;)
- party straws: a friend sent me to MSKCC with party straws – neon colored bendable straws with those little drink umbrellas built into some of them and pink flamingos on the others. Like the candy and chocolates, every doc and nurse who saw one of those little party umbrella straws sticking out of my plastic cup of chipped ice smiled, and that definitely eased the tension of 27 days in the hospital (they just never got old)
- slide-on shoes (my crocs or birkenstocks)

for treatments and post-op, I added:
- scrubs (elastic or tie waist pants, lotsa pockets, loose-fitting and easy care)
- button-front henley tees, short and long sleeves for any season. Henleys made it easy to access my port, hook up my infusion lines and even place ECG patches – and the variable button fronts meant I could maintain the illusion of modesty. During cold-weather treatment, I often wore a Henley tee under a scrub top for the ultimate easy-access but layered warm outfit.

I also mentioned that I found after the first hospital stay that I didn’t want or need any personal clothes in the hospital to wear. For one thing, I was far too bloated by the surgery/anesthesia to wear most of my clothes…and had no one and no place to do personal laundry since I was in a hospital 350 miles from home. I realized that the only things I really wanted were some completely disinfectable supportive shoes (hello, crocs!) and some very loose-fitting clean clothes to wear home (hello, scrubs!)

What five things helped you get through treatments and/or hospital stays? Feel free to leave a comment on this post (I’ll forward them to Kairol) or visit Kairol’s blog and comment here.

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Creative every day: writers write!

January 4, 2010 life, survivorship No comments

I love Twitter.

Aside from giving me the chance to find out interesting things every time I log on, Twitter enables people to contact and talk with actors, muscians – and my favorite, authors.

One of the writers I follow is Crescent Dragonwagon (yes, that’s her real name!) Crescent authored one of the anchor cookbooks on my bookshelves, The Passionate Vegetarian. We talked briefly on Twitter yesterday, and I mentioned that food writing is first writing and cookbooks are first books. I’ve read Passionate Vegetarian cover to cover a couple of times…and Crescent asked me why. I told her that I buy cookbooks to read them, to understand the stories behind the author and her food. I told Crescent that if I just wanted a recipe or list of ingredients without the story that makes them come alive, I’d do a search on Recipeza’ar or Allrecipes.com and call it a day.

But while I use both of those resources, when I want to read, I choose one of my favorite cookbooks.

Why?

Passionate Vegetarian is a cookbook, but it is first a book. And Crescent is a cook who brings magic to her kitchen and her ingredients by first being a compelling writer, by telling a story I don’t want to put down. Those things together make PV an entertaining and captivating read, whether I’m in the kitchen cooking or cuddled up on my couch on a snowy afternoon nursing a cup of coffee. But Crescent isn’t the only cookbook author whose works I read like novels.

My first cookbook was Anna Thomas‘ Vegetarian Epicure, a gift from my Uncle Will. I have read it cover to cover, or sections at a time, just for the joy of reading Thomas’ writing. Molle Katzen’s The Moosewood Cookbook and Enchanted Broccoli Forest, Laurel Robertson’s and Carol Flinders’ Laurel’s Kitchen, Paul Prudhomme‘s The Prudhomme Family Cookbook – all are authors and cookbooks that I have read repeatedly from cover to cover.

What does all of this have to do with cancer, and survivorship?

Writing is what I do. Nine-to-five (well, okay, ten-to-seven) I write technical manuals and software testing plans and scientific reports – but in the dark quiet of 2 a.m., I write recipes, online forum posts, emails, poetry. There’s a badge on the front page of this webside for Creative Every Day 2010 – a loosely formed alliance of writers and artists of all types who have pledged, as I have, to do or experience something creative every day of 2010 … and to share our creative experiences with each other to grow and share and experience each other’s creativity and enhance our own. January’s theme is ‘body’ and I’m translating some of my own body image issues into poetry for my #CED2010 efforts.

I’m a poet. So is Laura Morefield, whose blog is linked in the sidebar. Read Laura’s compelling vignettes about living with cancer, and you’ll understand it from the patient’s point of view in a way no other words can express the feeling.

And I’m a food writer – creating and improvising with food and with recipes to elevate my own small-batch jamming skills. A few years ago I did some food writing for a young low-carb magazine called Carb Health, and a woman looking for a low-carb forum discovered that they’re still archived online. I re-read the articles, and although the information needs a bit of updating, the writing stands the test of time.

Because whether it’s cancer or body image or survivroship or dog training, first a writer must write. Welcome to my world.

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Checking out a new exercise solution: is a Wii for me?

December 27, 2009 survivorship, yoga 2 comments
Salute the sun. Ignore the goose.
Image by A-Wix via Flickr

I’ve been doing trying to do yoga daily since my surgical recovery started in June, 2009.

The current problem is that coughing fits related to a bout of food poisoning around Thanksgiving seriously aggravated my new peristomal hernia – which impacted curtailed my yoga practice. These days, I’m limited by abdominal discomfort to simple breathing exercises, stretches, a modified Sun Salutation series on a really good day.

The intraoperative radiation I received as part of my 2008 surgery has bitten me, hard, with neuropathy in my left foot – neuropathy that flares if I stand too long, walk too far, or try to climb too many stairs. Reiki has helped manage the neuropathy, but when it gets a head of steam on, the pain extends all the way up the back of my left leg and ends at my left butt cheek. Not pleasant to stand. Not pleasant to sit. Not pleasant to move. In fact, when that kicks in, meditation in a laying-down position is just about the only thing that will get me through the night. Cold makes it worse. Did I mention that central NY has been in a deep freeze (under 20 degrees) for most of the week prior to Christmas, and that the temps just broke into the high 30s today?

I know, I know – all of these things are impediments. And/Or excuses.

But I have to find a way to continue to be active.

So today, I did a yoga practice – sitting on the floor, legs extended. It was mainly stretching, but it was a practice, holding poses and being conscious of breathing for 15 minutes, no matter how much it hurt to stay motionless.

And then, I did a little hip-hop along with one of the FitTV exertron women. Not much – just 10 minutes of loose dancing. The dogs and I took a long, full circuit of the property walk this morning, and we’ll be taking full-circuit walks as often as we can, barring deep snow or ice-covered sidewalks. I can’t risk a fall, and I can’t tramp through deep snow anymore either. Ice is the most dangerous – balancing while holding two dogs who might be heading in different directions can get too tricky to handle.

But I keep looking harder and harder at the Wii Fit – and telling myself that there are at least a dozen other ways I should spend $350 (console, $199, balance board and Wii Fit, another $150.) Maybe there will be ways I can figure out how to (safely) use my Pilates Performer. Maybe using my stepper for 5 minutes every day won’t be too hard with my numb left foot. Maybe it’s time to bring my folding XL Glider downstairs and see if walking weightless is less painful.

I dunno. I have to take another tack – ’cause what I’m doing ain’t working!

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