Posts Tagged ‘assemblage angels’

More and more, I’m finding that living with chemotherapy is really an elaborate form of endurance.

I’ve never been a runner, and I’ve never entered a race, but I’m going to use a running analogy here – so forgive me if you’re a runner and I get some of the details wrong…

Last fall, when I had six weeks of daily radiation, a weekly infusion of one type of chemo, and daily pills of another chemo, I eventually became extremely ill from the treatment load. But I managed to cope with it (mostly) by reminding myself from moment-to-moment that it was temporary. In a few short weeks I’d be through it. I now think of those days like running a fairly short race – maybe a 5K – when you haven’t prepared for it and you’re kind of out of shape, but you run it anyway. It probably won’t kill you, but if you’re not very fit, it will FEEL like it’s going to kill you! And, if you make it the distance, when it’s over you’ll collapse on the ground for a while before regaining enough energy to get up and have a beer to celebrate.

Since the beginning of this year, when I went back on Xeloda (an oral chemo I take daily for two weeks, then break for a week before going back on, with the goal of doing that for six months…), I’ve felt this round of treatment is more like running a full-scale 26.2 mile marathon after only half-heartedly preparing.  Again, it probably won’t kill you. And you can always slow down and walk the parts where you don’t have the energy to run. But – damn – it’s a long way. And some folks will have the experience of “hitting the wall” and not finish.

At the beginning of the race, there are tons of well-wishers around and lots of hugs and you-can-do-it’s. Even a few miles in, there will be people along the way to offer nourishment and encouragement. But inevitably there are those stretches where you’re alone – just you and your labored breathing and your wild mind trying to decide if you should continue on or stop…

Maybe that’s not how it is at all when you really do run a marathon. But that’s a pretty close description of what it’s starting to feel like as I approach mile 13 in this marathon of treatment.

That’s not to say I’ve been without support and encouragement and love and prayers. I surely have had all that and more. I think of the many “angels” who have been with me on this journey, who have whispered in my ear just when I was faltering, who’s wings beating around me have created enough wind to move me forward another few steps. The angels I know are often flesh and blood, occasionally made of wood and rusty bits, and sometimes merely ethereal.

I’ve tried to honor the angels in my life by creating my “artful” assemblage angels. Today, I’ve also created my own little Treasury gallery on Etsy called “Winging It” – to show off the work of other artists who appreciate angels and birds and other winged beings. (You can take a look until Friday at noon when the treasury expires: http://www.etsy.com/treasury_list.php?room_id=126124)

They are surrounding me now, moving the air around me, guiding me forward through the next few miles of this marathon called “cancer.”

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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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I have a really good excuse for not posting anything here for a week! I have been a busy gal! Here’s the evidence:

Last Sunday: I had a “sound healing” session with Leigh Ann Phillips. She does amazing and unusual healing work with crystal singing bowls. I’ve never seen so many singing bowls in one place (I’m guessing there were at least 20). My eyes were closed for the whole session, but I swear it sounded like there were five people playing the bowls at once. She assured me it was just her! To say it was a powerful experience doesn’t do it justice. I was literally vibrating when I left. You can read a whole lot more about what she does on her website. (I have my friend Lerin to thank for giving me the session. Leigh Ann is planning to return to Santa Fe in March and I’m planning to see her again…it was that uplifting!)

Tuesday: I had my 8-week follow-up visit with the surgeon, Dr. Brown.  He was very happy with my recovery and gave me the “all clear” to do whatever activities I want to now (no more restrictions on lifting, and I can try a more active yoga class if I feel up to it!). We spent more time talking about his favorite football team (the Saints) than we did about my health. I think that’s a good sign.

Friday: Tim and I took a little day trip and had the best time without even going very far. Our first stop was Madrid for a surprisingly wonderful lunch at a new “Southern cooking” restaurant called The Holler. The crispy chicken was breaded and fried to perfection! It was served on organic greens with cheese and fruit – utterly yummy. After lunch we popped into a little co-op gallery called Spirit in Art where I got even more inspired to create (results below!) after seeing what those artists were up to.

From there we took back roads along the Sandia mountains, drove through San Felipe pueblo, and even kept to the unpaved roads along the Rio Grande until we came upon a sign that read: Tribal Members Only Beyond This Point. We backtracked a bit and, unbelievably, we managed to be hungry again and had to stop at the Flying Star Café in Bernalillo for apple crisp pie (delicious, but NOT as good as Shawn’s version of apple crisp!).

So, you’re now wondering, what was she doing on the other days that she didn’t have time to blog? Well, I’ve been continuing to make those assemblage angels I mentioned back before the surgery, and I finally got brave enough to show the world what I’ve been inspired to create – so I opened another Etsy shop where I now have my Artful Angels for sale. Here’s a peak at a few, but please visit the whole gang at artfulshe.etsy.com.

I was working late into the night last night to get the new site up and running. I hardly slept. And then this morning I was stunned to find another Etsy seller had already discovered my work and featured one of my angels in a “treasury” she made (it’s a way for Etsy sellers to promote other Etsy sellers’ work). So, if you’re snooping around Etsy, check out this treasury too! But hurray because they only last two days. The one I’m featured in expires on Tuesday at 3:00 PM.

Now that you’re caught up, I wanna go see how many “hearts” my angels have gotten (folks who like your items can list them as one of their “favorites” – they also call them “hearts”). Gotta run! Back in a jiffy!

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Well, you’re hardly going to believe this: although I made it up to a whopping 112 lbs. over Thanksgiving weekend, looks like I’m going to head into tomorrow’s surgery at about 109. Honestly, I’ve done my best to “bulk up” but I think my nervous energy of the past few days has been burning up calories as fast as I can eat ’em.

Yesterday, Tim and I went to Harry’s Roadhouse for breakfast and I purposely chose the Lemon Ricotta Pancakes AND the Homemade Turkey Sausage in an effort to put on a final pound or two. However, after breakfast, we bought a truckload of pinon and cedar firewood, and I helped unload it and stack it on the back porch – which was more energetic than I’ve been in months. It felt great to be able to do it, but I probably burned up all the calories from breakfast in the process!

I’ve also had a bit of a creative streak unexpectedly hit recently. I awoke in the middle of the night a while back with an idea for assembling some old junk (what real artists might call “found objects”) into birds or angels or art dolls – I wasn’t entirely sure what the outcome was supposed to be. I tried to get back to sleep, but finally gave up and went into my little studio/office and began putting bits and pieces together. Over the next few days, I raided Tim’s wood scrap pile, pulled an old box of doorknobs and rusty escutcheons out of the attic, and dug out some vintage watch faces I’d picked up somewhere over the years. A few beads and buttons, plus scraps of stained sheet music, and these “assemblage angels” began to unfold.

I’m delighted with the results, and I think it’s been a wonderful way to channel my nervous energy about the upcoming surgery (even if it meant a little less sleep and more burned calories). I’m reminded by this experience that if you’re willing to listen to some of those crazy middle-of-the-night notions, occasionally you get guided to an unexpected gift.

My latest creative effort: a few more angels to watch over me!

So far I’ve completed six of these “angels” and I have six more in various stages of the process (with ideas for so many more!)…but it looks like everything is going to have to go on hold for a while now. Today I’ll be running around doing last minute errands in preparation for going into the hospital tomorrow. I’m back on a clear liquid diet today and this afternoon I’ll have to begin taking the “Go Lytely” (what an ironic name for that vile stuff) in order to be completely cleaned out for surgery. My best guess is that after today’s ordeal, I’ll be down to 109 lbs. by tomorrow morning.

But the best part of today is that Alison arrives! In addition to being my chief hand-holder for the next week, she’s also agreed to post an update or two following my surgery. I figured you’d want to know how I’m doing, and since I won’t be in any shape to sit at the computer (for quite a while probably), Ali is going to be my “spokeswoman” for a few days.

Okay, it’s time to make the most of this day. And thank you everyone, in advance, for all your prayers and healing thoughts as I go into surgery tomorrow (scheduled to start at 12:30 and last for about 3 hours – that’s roughly from 2:30 to 5:30 for all you folks “back East”).  I love you all!

"love you yet...beautiful memories have no regret"

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