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Posts Tagged ‘creativity’

Time to tie it all together! (I stamped words on the ribbons to remind me how far I've come)

Over the weekend, I attended a wellness workshop for cancer survivors hosted by the St. Vincent Cancer Center. Marla, the center’s social worker, had invited me ages ago, even before I thought to call myself  “a survivor.” But as the workshop date approached, I found I was a little reluctant to go. I couldn’t really explain why. But I had told Marla I would be there, so I went. Then, sitting in a circle with twenty-five or so others, I heard another participant articulate beautifully her own reluctance to attend. She said she’d already put “having cancer” behind her and she really wasn’t interested in dredging up all those difficult emotions again. I immediately understood exactly what she meant. And yet, by the end of the day, we both agreed the workshop was a truly valuable experience and had helped us renew our commitment to making the most of this gift of life we’d been given!

The front cover of my little "collage" book made during the Wellness Workshop

(This will seem a bit odd, but way back when I was diagnosed I remember telling my therapist that I didn’t look forward to having the label “cancer survivor” attached to me. Of course I wanted to survive – I just didn’t want to live with such a narrow label of who I was…But here I am today talking enthusiastically about attending a “cancer survivor’s” workshop!)

The program was held at the Hotel Santa Fe and funded entirely by the Heidi Paoli Fund of the New York Community Trust. Of all the women in the room, only two had not had cancer: Cynthia (my nurse practitioner, who I was delighted to see there), and a woman named Joyce, who was introduced to us as the person behind the Heidi Paoli Fund that made the workshop possible (both her husband and his daughter, Heidi, had died from cancer). Nearly all of the others there had lived through breast cancer, but there were a few of us with other types: Nanci had lung cancer, Sarah had throat cancer, and me with colorectal cancer.

Inside, with pieces that can be removed and replaced as I wish!

Each of the two facilitators had survived breast cancer – both more than once! Marla, who compiled a huge notebook for each of us with tons of resources and information, had been through it twice. The other presenter, Pasha Hogan, a wonderful inspirational speaker as well as yoga instructor, was a three-time breast cancer survivor! She impressed me even more with her passionate way of leading us through some stress reduction techniques, including guided meditation and yoga.

And, we had a nice lunch under a portal in the Hotel’s courtyard. (I could overhear the other tables exchanging cancer war stories with each other, but thankfully our table talked mostly about gardening!)

The outside of my collage book...

By far my favorite part of the day was the “creative arts” project we worked on in the afternoon. We created these sweet little collaged accordion books. Of course I launched into mine with gusto! We were asked to set aside our “inner critic” and just cut and paste without questioning what or why we chose the images we did. Afterward, we were asked to share a little bit about our collage. I couldn’t help but notice that my perfectionist self hadn’t fully stepped aside while we were creating. So, I decided to honor that bit of me by including an image of a book with the title “Perfection.”

I know that I’ve been dramatically changed by my experience with cancer, but I discovered during this workshop that I like the fact that there are still some aspects of me I haven’t lost. I admit that I’m actually glad to find my “perfectionist” has survived along with the rest of me!

So, here are some photos of the artsy little “cut and paste” project I came away with. I can also say that I am very grateful now to be called a cancer survivor. Let’s hope the label sticks with me for a long, long time!

The back cover...

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Recently, as I was going through my stash of old sheet music looking for inspiration and something interesting to use in the creation of one of my assemblage angels, I came across a piece with the words “con fermezza” – an instruction to the musician to “play with firmness.”

For some reason this idea appealed to me. Lately I’ve been trying to see this leg of my journey with cancer as an opportunity to recreate my life more artistically than ever. An artist I admire named Keri Smith says in her book Living Out Loud: Activities to Fuel a Creative Life that “play is the most important element in discovering who you are.” So I’ve started working on playing more…and in my case, since play hasn’t ever been my strong suit, I think I need to practice with firmness!

Con Fermezza Angel

In continuing my regimen of taking chemo these past few months, I realize I haven’t particularly wanted to accept the myriad side effects as they are building. I seem to have created this idea in my mind that I’d be able to “breeze through” this round of Xeloda. But odd things keep developing that I can no longer ignore. So I took this list of things with me to talk about with my oncologist at our last appointment:

  • The “hand and foot syndrome” is getting worse. The skin on my palms and soles is much redder, the tissue has very little elasticity now, and my fingers ache all the time.
  • Moles, freckles and age spots – call them what you like – are cropping up on my hands, feet, and face at an alarming rate now. I’m especially aware of new ones on my nose and above my lip (creating a nice shadow effect that makes it look like I have a faint mustache!)
  • My vision is changing. It’s become uncomfortable to wear my contact lenses. My eyes simply burn sometimes, and I occasionally see “floaters” and spots.
  • About a half hour after I take the pills, I have a lot of abdominal discomfort. I generally have to lie down for a while until the pain passes (which it usually does within a short time).
  • I’m rarely able to sleep through the night. I fall asleep just fine, but awaken in the middle of the night and have trouble getting back to sleep.
  • I get tired a lot. The fatigue comes on quickly, like hitting a wall. I’m seemingly fine one moment and the next I’m not.
  • I only want to eat sweets – nothing else tastes very good or holds much interest for me. I have little enthusiasm for food (except for cakes and breads and pies and chocolate).

To each of my complaints, Dr. Fekrazad gave nearly the same answer: “Yes, that’s from the Xeloda. And it’s probably going to get a bit worse.”  Oh, joy.

But here’s what he said that I could appreciate: He described his role as similar to that of a parent who takes their child in for a nasty shot. The child is crying and screaming from both fear and pain.  The parent knows it’s awful for the child, but also knows it’s for their benefit. They don’t like inflicting pain on their baby, but under the circumstances it’s what they feel they have to do.  Con fermezza.

Then Dr. Fekrazad actually said these words: “I know I’m poisoning you. I know it’s difficult.” He also said that while he strongly recommended I stay on the chemo until July, if the time came when I knew in my heart I couldn’t tolerate it any longer, he would agree to stopping the treatment early. He said he trusted my intuition about when “enough was enough” and that he would support me if I made the call to quit before the six months was up.

So, I’ve done a little more self examination (does it ever end?) and decided that maybe I can approach this part of the journey in the same fashion as my creativity. Play with firmness! Think of this whole chemo treatment reality as just a game – laugh at my freckle mustache, get a pair of quirky horn-rimmed glasses, wear gloves all the time (like it’s Hollywood or something), live in pajamas and sleep during the day when I have to, enjoy being up at night when the world is all quiet and there’s nothing to distract me from playing. And eat cake.

Con fermezza.

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