Tuesdays at the Chemo Unit, Tuesday, May 8, 2012

Today I began my “waiting project” with great earnestness. But perhaps I was trying too hard . I was antsy and fidgety. There also seemed to be more traffic crossing in front of me and I felt self-conscious  sitting there cross-legged on the floor with my shoes off.

A person without purpose is suspect. I even read in one blog about “those people who “just sit there” while they are waiting”. I decided to hold my notebook and pen as a “cover”. Not everyone can understand the enlightenment of waiting.

One nurse worried over me, believing that I had not been able to find a chair. Some people smiled, others just stared. One woman looked quite pointedly at my abandoned shoes as she walked by.

So the magic wasn’t there today in the waiting area. However my blood pressure was still low and I lucked out for my treatment. Today my nurse was Manny, one of the nurses about whom I have waxed eloquent before.

One of the best parts of getting Manny is that we talk about food the whole time. I asked him what he was cooking and he described the incredible shiitake/leek risotto that he made the other night. He gave me all the details (4 cups raw risotto to one box of chicken stock – he uses Campbells). He gave me some directions:

“you have to stir it for 20 minutes… not just stir, you have to be with it, you have to  love it”.

He told me about the incredible fish he ate while on vacation in Hawaii. We drooled together over the picture on his phone of the thinly sliced sashimi that he had at one of the fanciest restaurants in Maui.

Before I knew it, the treatment was over and I felt as if I had been visiting with an old friend. I came away happy and hungry. A good day.

 

Sam

Ultra Sounds Mondays, May 7, 2012

Welcome back after a quiet week.

Over the last few months I have had the pleasure of getting to “know” the wonderful Viola Moriarty online. I am delighted, thus, today to present some of her work for today’s submission. This will be our first mixed-media submission and is part of Viola’s “Barbie gets cancer” series. You will never look at Barbie the same way again. Click   to read more about this series. Click to visit Viola’s website.

Sam

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Here’s what Viola has to say about herself:

I  painted my first painting almost 10 years ago, and knew as I felt brush and paint on canvas that I would change everything to paint.  And I did. 

 In 2007 I was diagnosed with stage 2 breast cancer, had partial mastectomy and 18 lymph nodes removed, targeted radiation and 6 rounds of kick ass chemo, followed by tamoxifen.

Last August I was diagnosed with Stage 4 metastatic breast cancer with metastesis around all my organs, the CNS, and many large and small brain tumors.  Had full brain radiation for three weeks followed by a lot of vomiting (lost 50 pounds in two months–good thing I had the extra to lose!), then femara and now fasolodex shots.  The treatments have been working and right now I’m doing great.  
 
My greatest love—even more than painting–is my family.  I have two amazing daughters:  Anna Moriarty Lev () and Phoebe Moriarty Lev ().  And I’m married to their father and the love of my life, Jon Lev.  Henry and Dulcinea are our two cats.  We live in Vermont, though I am from Denver, Colorado
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And here is what Viola had to say about the “Barbie” series:
The barbies  are from the Barbie Gets Cancer section of the ExVoto Suscepto Exhibit which traveled to several venues in 2009, including a presentation at Stowe Weekend of Hope in Vermont, Southern Vermont College, and the Southwestern Vermont Cancer Center.  They were part of my response to my first diagnosis in 2007.  I’m now working on Full Brain radiation Barbie, Fasolodex Barbie, Brain Met Barbie ….along with a series of paintings called “live your life, my onclogist says”.  

 
No matter what I envisioned when I played with those dolls (just as I’m sure Ruth Handler had no idea about her future when she invented them) I never once saw myself as growing up to get cancer.  
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Tamoxifen Barbie, 2008:
Radiation Barbie, mixed media on board, 2008:
Dexamethasone Barbie, mixed media, 2008:

Tuesdays from the chemo unit, Tuesday, April 24, 2012

There’s a reason I didn’t post yesterday from the chemo unit. After my article last week I decided to try an experiment. I decided that I would try to do nothing while I waited. Or, rather, I decided I would try to actively wait instead of just filling time until my appointment. It was a double trial because I had a clinic appointment before my chemo.

So I bet you are all wondering how I did. I bet you’re wondering if I could last without reading, writing or playing computer scrabble. Well, to you naysayers, I tell you that the first appointment went just fine. I started off by sitting and watching the world go by. I used the time to do some planning in my head for my writing. Planning is my default state when I’m not occupied elsewhere. After a bit, however, I tried to let even that go.

After about 15 minutes, I started to drift and then fell asleep. Sleeping was an excellent way to make the time pass quickly, but it felt like cheat. Besides, it’s not comfortable to sleep in the waiting room chairs. After my sleep I began to get antsy and was tempted to just quickly check my email or check the weather. But I resisted and actually found that I became quite relaxed. So relaxed that when my blood pressure was taken in my appointment, it was nice and low.

Hmmm. So by not doing anything or by actively deciding to make waiting my occupation, I became more relaxed.

I did give in when I went up to the chemo waiting room. “I’m sure I’ve got important emails to answer!” I thought to myself. “I’ll just check them and then begin my “wait” again. This time, however, I was taken in so quickly that there was no time. Next week I shall set myself the challenge to make it through the entire visit without a distraction. How long can you wait?

Cheers until next time.

Sam

Ultra Sounds Monday, April 23, 2012

I hope you are having a wonderful Monday.

Today I present you with our first ever painting here on Ultra Sounds.  I am so pleased that it comes from Cid Palacio, the founder of ART for Cancer Foundation in Toronto. Cid was the one to invite me to the art workshop where I created my oeuvre (or is that hors d’oeuvre).

I find this painting extraordinary and haunting. It resonates with me both as the daughter of a cancer patient and as a patient myself. I will let Cid describe it to you in her own words.

Sam

 

 

I created this piece around my experience as a caregiver to my parents and their cancer journey.

They climbed a steep mountain and in my mother’s case a series of steep mountains.

While they were climbing, they did not always see the summit, but knew they had to keep on climbing and have hope and faith that reaching the summit would free them from pain.

While they were climbing, they knew that they were not alone, there were many others on that same journey, and yet they also knew that this was a journey where each step only they could take, as their loved ones and friends supported them from the side lines.

Cid Palacio

Founder of the 

…where Heart connects with Art for Creativity and Hope

 

Tuesdays at the chemo unit, April 10, 2012

Overnight it seems as if the drivers and cyclists of Toronto were transformed into rude and agressive warriors. It was bizarre this morning on my drive to have close call after close call with drivers who were just in too much of a hurry to wait for a space in traffic. I’m not usually curmudgeonly about traffic, but this morning I felt like there was something in the air. It started me off in a sour mood.

Once on foot, I took a different route to the hospital. Instead of weaving my way through the back streets of Chinatown, I walked along Dundas street and passed by the sweeping facade of the new Art Gallery of Ontario. Looking down at me from the pillars were posters advertising a Picasso exhibit and a Frido Kahlo/Diego Rivera exhibit. As I passed under the luscious images of these extraordinary painters, I felt nourished and hopeful again. Sometimes I forget how much art feeds us and it takes a giant poster of great art to remind me of that truism.

Because of this revelation, when I arrived at Princess Margaret I truly noticed the care that was taken to include art in the hospital. There are beautiful paintings on the walls. If you look down from the glass elevators to the basement floor clinic, there is a wood and stone arrangement that looks like a small stream. The new chemo unit uses artistic design features to make it feel less institutional. Today, more than ever, I noticed these little bits of “food” left in the hospital to feed us patients and was extra appreciative.

Coincidentally, I also received in my inbox the first submission to Ultra Sounds of a painting – oh and what a great painting it is (This is just the teaser, however. You’ll have to wait a couple of weeks before getting any more details). It seemed that art was speaking to me from everywhere.

Enjoy the rest of your Tuesday and may you enjoy many works of art in your life today.

Sam

I am sitting in the fancy new waiting room, noticing again what a nice job they did in the renovations to this important space, the place where people are scared, anxious, and in pain as they wait for their chemotherapy. I reflect, once again, on the fact that I am here every week and I never have to pay a penny out of pocket thanks to the Canadian health care system.

I  get exceptional care here at the hospital. Despite my belly aching about too much tape on my arm or a long sit in the waiting room, most of the nurses here are outstanding and my doctors are incomparable. And I don’t have to worry about whether I can afford it or not.

I look around the room and I see people from all walks of life. There’s not a unit for those that can afford it and those that cannot. We all get to enjoy the fancy chemo unit together.

When I gave birth to my son in the hospital, my sister-in-law who lives in the U.S., asked me how much it cost for my time in hospital.  I looked at her stupidly wondering what she meant. After giving it some thought, I remembered that I had had to pay $10 to have a phone in my room, which I have to say I had resented at the time.  When she had her son, a few months after me, it cost her over $1000. She incurred that cost, despite having good medical coverage.

When I was preparing to have my stem-cell transplant, I found a book outlining what I might expect during the transplant. There was a whole chapter on negotiating with your insurance company to pay for what was, 11 years ago, a $200,000 procedure in the U.S.   My cost: the phone rental charge – it may have been $50.

I believe I have used far more than my share of health care dollars, which makes me feel a little guilty sometimes.  But I  am profoundly grateful that through this time of illness, I have not had to worry about how to pay for my treatments. For all of its faults and gaps, I think it is worth celebrating a health care system that offers high quality care without out of pocket costs. I am happy to pay higher taxes to live in such a system, to ensure equal access for all.

There’s my patriotic post for the day.

Sam

Looking around the chemo unit waiting room I wonder about all of the stories that are sitting here. What kind of illness do people have? How are they feeling? How strong are the drugs they are receiving?

What do they think about being here? Are they grateful for the wonderful treatment we get ? Are they anxious about how they will feel after the treatment? Are they frustrated with waiting? Are they worried about their future? Are they simply non-chalant, just passing the time.

I see some patients who look sick – they are thin and frail, pale, bald. Perhaps they have a cane or they are being pushed in a wheelchair. Others are stealth patients. They look healthy, they have all their hair.

Where have they come from today. Did they have to drive far? Did they have to leave work or are they working at all? Are they here alone or did they bring a spouse, a parent, a child, a friend? Are some coming from farms? Did they have to wake up especially early to do chores before coming. Did anyone fly in from the North? Do they have a regular seat on one of those tiny planes? Did they walk over from a nearby neighbourhood?

Where did they come from originally? Are some from exotic locales who are shivering because of the unexpected cold snap today? Are others from war-torn countries, poor countries who are grateful to be sick in this country in this time? Are there some  who are lonely for a homeland and find Canadians cold and unfriendly?

I want to connect, to learn the stories, to share mine. Yet I’m shy to sit down and begin talking. There is such a strong sense of privacy, of just holding it together that it seems rude to intrude. Occasionally I can perceive an openness and begin a conversation. For the most part, however, I simply imagine the stories behind the faces. I look for clues in expressions, in hands, in feet. In my imaginings, there is always a happy ending.

sam

Happy Monday!

Since I began working on this project, I have had the opportunity to connect with many wonderful people who are working in the world of creativity and cancer. One of these people is , an author and facilitator of expressive writing workshops for people living with cancer. Sharon’s name comes up often in the context of cancer and creative writing. Her workshops sound powerful and significant for those who participate. She also moderates a blog called , where she offers weekly writing prompts for people living with cancer.

I have been enjoying corresponding with Sharon. Though busy, she has spared time to offer me much advice and encouragement for Ultra Sounds.

Below is an article that Sharon wrote for the September, 2011 issue of . She has kindly offered to let me repost this article in the blog.

Sam

WRITING IT OUT

 

by Sharon Bray

Nearly twelve years ago, I sat in a surgeon’s office, feet twitching with impatience. I checked my watch. I’d waited twenty minutes. If he didn’t appear soon, I was going to be late for the meeting I’d scheduled nearby. I reached for a magazine. National Geographic, Sports Illustrated, an old issue of People. Nothing of interest. I sighed and check my watch again.

“Hello, Sharon.” The doctor came into the room, a file in his hand. I smiled.
“Hi, Dr. C.” My eyes darted to the file and back to his face. I felt a flicker of 
     unease. “So? What’s the verdict?”

It had been exactly one week since the procedure, a biopsy of my left breast, ordered the same afternoon the radiologist pointed to the constellation of calcifications visible on a mammogram and sent me across the courtyard to the surgeon’s office. My mammography was routine. The biopsy seemed, at the time, little more than precautionary, just to be sure. It was nothing to worry about.

Dr. C. sat down in a chair across from me, opened my file and studied the paper that lay on top.
“It’s cancerous,” he said. “Malignant.”
“Cancerous?” How could it be cancerous? I forced myself to pay attention, to make sense of the jumble of 
     words coming from his lips.
“Early stage. Non-invasive, but…”
“But?”
“We need to take care of it right away,” he said. “Left alone, it’s a bad act.”

I nodded my head as if I understood what he was saying. A bad act. “So, what’s next?” Cut to the chase, I thought. I have a meeting to go to. I don’t want to be late.

A lumpectomy was scheduled for the following week. “Fine,” I said, sliding off the exam table. At the door, I extended my hand to shake his. “Thank you, Dr. C.,” I said in my best professional voice, but the doctor didn’t let go of my hand.
“Sharon,” he frowned at me. “Are you all right?”

Of course I was all right. I had a meeting. If I hurried, I could get there on time.

It would be weeks after the lumpectomy, after the endless days of radiation and multiple appointments with a team of specialists, before the reality of cancer began to sink in. I existed in a fog, disbelieving and numb. I donned a blue hospital gown in the radiology department every afternoon and swallowed a Tamoxifen pill every morning. Still, I felt like a phony. How could I have cancer? I didn’t look any different.

I began to experience some unexpected side effects to treatment. My digestive tract suddenly malfunctioned. I lost weight. I cried a lot for no apparent reason. My husband and close friends expressed concern, but other than the conversations between my doctors and me, I avoided discussions of cancer. I carried guilt around like a sodden backpack. Other people had real cancers, the kind that were life threatening. I’d gotten off easy. Finally, at the urging of a friend, I signed up for a summer creative writing workshop.

Writing has always been the refuge I turn to in any difficult period of life. I’d filled dozens of notebooks with emotional outpourings after my first husband’s sudden death, but this was different. I’d be writing every single day for a week with a group of strangers. I balked at the idea, and considered withdrawing several times, but something kept pulling me toward it. I showed up on the first day of class, nervous, but determined to stick it out. I quickly discovered a gentle and encouraging instructor, and under her guidance, a safe and supportive writing environment. Nevertheless, I wore my protective veneer like a suit of armor, choosing to write stories that revealed nothing about what I was going through at the time.

On the very last day of the workshop, the instructor passed around a straw basket filled with slips of paper, a single line from a poem written on each. I closed my eyes, reached into the basket and drew a slip. I opened my eyes and read, “The hospital corridor was dimly lit.” My heart lurched. I stared at the words for a moment, took a deep breath and opened my notebook to a blank page. Words poured onto the paper. I described the radiology waiting room, blue hospital gowns, my silent companions, my feelings of guilt, my fear when the technician called, “Ms. Bray?” At the end of twenty minutes, I had written several pages.

When the instructor asked who would like to read aloud, I timidly raised my hand. “I will,” I said.

I finished reading and nervously waited for the group to respond. One by one, they began, describing how my words had touched them. Clearly, this was the most powerful piece I’d written all week. I felt something inside me open up. I had begun my journey of healing. Writing gave me the key to unlock the door, write into my experience, make sense of and discover meaning from it.

Cancer—or any other serious illness—changes us. Perhaps, as poet Jane Hirshfield said, “Illness remodels us for some new fate.” A year after my diagnosis, I began leading expressive writing groups for men and women living with cancer, providing the same supportive environment for them to write and share their stories of cancer just as I had experienced the summer before. I’ve been leading those writing groups for eleven years now, and thanks to the cancer survivors who write and share their stories with me, my life is richer than ever.


Bio: Sharon Bray is the author of two books on the healing power of writing during cancer: A Healing Journey: Writing Together through Breast Cancer (2004) and When Words Heal: Writing Through Cancer (2006). She leads ongoing writing groups at Scripps Green and Stanford Cancer Centers as well as a writing workshop for faculty and students of Stanford Medical School. She also is the author of the blog, , which features weekly writing prompts for men and women with cancer. For more about Sharon, see.

Due to technical difficulties, I’m posting my Tuesdays from the chemo unit on Wednesday.

Yesterday was a long day at the hospital because I was getting an infusion of iron (doesn’t that sound delicious). Sitting for so long got me thinking about the chairs in the unit.

The chairs in the unit are giant – they are built for giants. I think the idea is that  chemo patients that have to receive treatment over the space of a few hours want a big comfy chair to relax in. Well they may work for a very tall large person, but I feel dwarfed by them. I feel like a little kid sitting in her grandpa’s naugahyde la-Z-boy, my feet dangling down inches from the floor. Sitting there for four hours is not a comfortable venture.

It seems to me that with a little creativity and imagination a truly adjustable chair could be developed. I did a fair bit of research (not exhaustive I admit) and found some chairs that looked more comfortable than the ones in the unit now. There was not one that I found, however, that could  provide a universal fit.

Here is what my ideal chair would be like. Glen are you listening? (My friend Glen Hougan is an innovative industrial designer – maybe he will design this chair – check out his site at  ).

My perfect chair:

- adjustable height, adjustable width and adjustable seat length.  People come in all shapes and sizes.

- adjustable foot rest.

- ergonomic design for reducing back pain.

- adjustable inflation of back – eliminate the need for extra pillows

- the chair should recline

- a table that swings over the chair for eating or working would be helpful to most of the patients I see trying to balance lunch or a computer on their laps.

- if I was to be really decadent I would include a drink holder and a reading light.

Of course the chair should be eco-friendly and affordable.

 

There – it’s not too big a list. For those of you who get to use hospital chairs what else would you add to the design?

 

I imagine there are whole theories about creating designs that can adapt to the individual. Is it that hard? Glen do you want to weigh in on this?

 

Sam