Ultra Sounds Monday, June 25, 2012

Good morning all,

Since I have a little pull with the moderator of this blog, I decided to post one of my own poems for today’s submission.

I wrote this poem after stumbling across an old picture of myself on a canoe trip before becoming ill.  I was blinded by the memory of once being strong enough to carry a heavy backpack along a three kilometre portage. I had forgotten that once upon a time, I wasn’t sick. Here was proof. The poem reflects the mixture of emotions I felt in response to this picture.

Enjoy

Sam

 

 

 

The Girl with the Backpack

 

The picture is a little fuzzy

She didn’t want to be photographed

The large backpack was heavy

The long portage waited

“Just take the picture already”

Tall and strong

Long hair pulled back

With the wisps blowing in the breeze

She was ready to hack it off

So heavy and hot

Not knowing that a few years later

Chemotherapy would do the job for her.

 

She couldn’t know this would be the last trip

That her changing body wouldn’t allow her to go

to that place of deep quiet and true darkness anymore

She was a bit crabby that day

Maybe it was that time of the month

The chemotherapy claimed that too

Something she never thought she would miss

You want to tell that girl to shape up

To stop whining about the heat and mosquitoes

To pay close attention

So that she could replay the details later

 

I would like to be her again

Just for a day

To remember what was:

the smell of green

The cool silkiness of the water on bare skin

The clarity of the stars at night

The feel of paddle in hand

Traveling away and away

 

Yet for all of her physical vitality

She was a frail creature on the inside

Jell-O

She was easily led away from herself

She writhed with self-consciousness

Avoided the hard things

And felt herself always on shifting sands.

She didn’t know how to be her.

 

She is stronger now

With fortitude she never imagined

Grounded like a tree

Yes she would like to hide in her old self a while

Trade up for a healthy body

But would not sacrifice the hard-earned sturdiness

that helps her now come back from the woods and face the future.

Tuesdays at the chemo unit, June 19, 2012

Today my husband, Daniel, drove me in for my treatment. While I love to have the time with him, there is always a bit of trepidation about these trips.

You see, I actually like to go alone to my appointments. I feel independent and free to do whatever I need to do. I can chat with people or be completely quiet and alone. If I’m tired I can just sit and nap. I can be very focused on dealing with whatever that day brings.

When you bring someone, all of a sudden you have a guest that needs looking after.  I know, they are there to support me, but the reality is that my “support” person, can’t stand waiting around hospital waiting rooms. He is not as used to the waiting as I am. He wants to be outside.  He gets fidgety, which drives me crazy.

We do have our strategies. Daniel goes for walks during the long wait times. If it’s a tired day and I need the elevator, he takes the stairs. He paces around the long hallways observing the people there. It works out okay.

Once I’m out of the hospital I’m a different person. I don’t have that same need to be alone and focused. I feel more social and more able to think beyond my own needs. Having Daniel there now seems festive. It seems that I’m only curmudgeonly in the hospital.

Sam

Ultra Sounds Monday, June 18, 2012

Today I am pleased to post some more poems by Margery Hauser.  Once again in her own words:

In 1999 I was diagnosed with cervical cancer and had surgery that, at the time, we all thought had taken care of the problem.  However, it came back for a return engagement in 2008 and again in 2010, now taking up residence in lymph nodes and moving its way up from my pelvis into my abdomen. The poems below were written in response to various experiences during diagnosis and treatment.

Today’s poems are quite different from each other.

The first, Chemo Blues, is “definitely irreverent, but it reflects my personal feeling that finding the humor in a difficult situation is a way to maintain some balance”

“How do I tell you is really an expression of anger and frustration in reaction to all the people who told me how much they admired my strength and positive attitude.  Their words, undoubtedly spoken with the best of intentions, made it difficult for me to share my fear and sadness honestly.”

 

Until next time…

Sam

_____________________________________________________

Chemo Blues

 

Oh the first line of the blues is always sung a second time (oh yeah?) 
 First line of the blues is always sung a second time (kinda smooth!) 
 So by the time you get to the third line you’ve had time to think up a rhyme.

 Richard Stilgoe, Poppa’s Blues, Starlight Express

 

I’ve got those paclitaxel topotecan chemo blues.

Oh yes, those paclitaxel topotecan chemo blues.

It’s made my thumbs a little numb,  my toes are tingling in my shoes.

 

Treatment’s made me bald, ain’t got no eyebrows or eyelashes.

Yeah, treatment’s made me bald, ain’t got no eyebrows or eyelashes.

The upside is it’s cold and chemo gives me cozy, warm hot flashes.

 

My legs ache from the taxol and the topo makes my white cells disappear.

Oh, my legs ache from the taxol and the topo makes my white cells disappear.

On the other hand I haven’t had to shave my legs in almost half a year.

 

These drugs make me so tired, I just want to sit here staring at TV.

I said, these drugs make me so tired, I just want to sit here staring at TV.

It’s the best excuse for doing absolutely nothing, lazy as can be.

 

Some folks say it’s bad taste to joke when cancer’s got you by the nodes.

I hear some folks say it’s bad taste to joke when cancer’s got you by the nodes.

But I think all of us on this journey find our own kinds of roads.

 


__________________________________________________

How do I tell you

 

it’s hard to walk upright

with the weight of your admiration

pressing on my shoulders

 

too difficult to breathe

swaddled in your blanket of love

 

impossible to swim

through your riptide of caring

 

Your heartstrings tentacle tight

around me     I am confined

constrained   contained   restrained

 

Image   icon

idol    ideal

I dream Pinocchio dreams

of being real

Recently I have reconnected with some old friends and I’ve been reflecting on how we tell our stories. How do you sum up your life for the past twenty years? If illness has dominated, it sounds rather dreary to say “Yeah, since we last saw each other I’ve spent most of my time in hospitals. How are you?”

As I compose the emails to these friends I realize that I have instinctively tried to to summarize what my illness has meant to me. Not the gory details, but how it has shaped my life – both good and bad.

Similarly, when I first tell new acquaintances about my illness, I’m less inclined to give lots of detail.  Frankly, I’m bored with the details, but I’m constantly exploring what it means to live with a disease and how it shapes a life (at least my life).

How do we construct our lives when major illness influences every aspect of what we do? How do we then construct the story of that life to share with others?

Creative expression gives many people a way to tell their story in a way that can capture, at a visceral level, what the illness has meant to them. I’m honoured that so many people have chosen to share their stories through this blog and if you are newer to the site, I encourage you to go back and look at the archives.

Looking forward to many future stories.

Sam

Hello and good day on this hot and sticky day in Southern Ontario, Canada.

Today’s submission is a drawing with accompanying text from a chapbook by Julianne Davis of the U.K. . You can read the whole chapbook at    I like the juxtaposition of the airy, la-di-daa title and picture set against the image of mutating cancer cells and the strong ending statement.

Julianne’s bio:

My Cancer Cells Are Beautiful is the title of an expression of feelings, thoughts and dreams through poetry and art, upon my diagnosis of cancer.

I was born in Bristol, United Kingdom. I am a mother to two children.

 

My Cancer Cells Are Beautiful

by Julianne Davis

 

 

This was the first picture I drew

after finishing my treatment.

 

One day I was looking at some pictures

of cancer cells and I

was thinking how beautiful

they looked.

 

The way they moved, mutated and

multiplied.

A stunning catalyst of cells,

dispersing like shooting stars,

mutating everything it touches.

 

I hate you.

This weekend is the “Ride for the Cure” to raise funds for Princess Margaret Hospital in Toronto. Princess Margaret is my home away from home and I’m pleased to support my friend Paul Shilton who will be riding. If you want to sponsor him, you can still do so via the link down the left hand side of the page.

 

And now for something completely different……

These videos have nothing to do with cancer and everything to do with creativity. Volkswagen sponsored a contest where they asked participants to develop  fun ways to change behaviour. Here are some of the outcomes.

 

So how could we apply the fun theory in hospitals? Any ideas out there?

Sam

Technical difficulties kept me from publishing on Monday, so play along with me and pretend it’s Monday today.

Today give yourself some time and space to view this submission. ThIS video is a documentary about a remarkable young man whose life was cut short by cancer. His approach to his own illness was to capture the world in photographs. Below are words from his mother to introduce the video.

Sam

“When you are going through hell, keep going,” Silas read this quote to me off of an iced tea bottle cap, shortly after being diagnosed with stage IV cancer, just days before his 29th birthday in October of 2007. That same day he told me, “it’s going to be okay, mom,” and with all of my troubled heart his words became truth at that moment. 

Silas “Sy” River Bennett was a wildly independent young man with a commitment to social and political change; someone who enjoyed the big debates and small wonders of life in equal measure. It seemed he was born with a sense of humor that he carried throughout life; a life that was full of plans and ideas. Silas knew that with stage IV cancer the prognosis was not encouraging. Yet, despite the challenges he faced, Silas continued to move forward with dreams and ambitions that were important to him. He planned, among other things, to return to Keene State College in New Hampshire, where he had been pursuing a degree in journalism until his diagnosis. With his electric intellect and creative mind, journalism was not only a career path, but a passion. 

After his cancer diagnosis, Silas continued his journalistic work; first bravely documenting his life on video, and then turning to photojournalism shortly thereafter. During this time Silas endured brutal chemotherapy and radiation treatments, two surgeries to stabilize his vertebrae to avoid paralysis, and a clinical trial. He was in almost constant and severe pain, and was hospitalized frequently. His was an unrelenting, aggressive cancer, and within months Sy needed the use of a wheelchair. Photographing the world from this new perspective, often with his legs pulled up as it became harder to control the pain and get comfortable, his knees are visible in some of his photos. In looking through these unintentional “self-portraits” I cannot help but smile as I recall a remarkable man with tenacity and humor; an incredible and feisty spirit who remained optimistic even through the darkest of news. Through his photographs, Silas documented everything from the raw emotions of family members to the beauty of spring blossoms flowering as his young life waned. 

On May 24, 2008, Silas awoke early. At that time, we were staying in a hotel room up on Beacon Hill which was close to MassGeneral, where Sy was receiving care. He wanted me to take him to a photo store close by. As with many businesses in Boston, this one was not wheelchair accessible. With much difficulty and the assistance of a compassionate manager and an employee, Silas stepped out of his chair and up into the store. Once he was settled back into his wheelchair, Silas looked up at the young manager, and began talking with him about how he had been doing some amateur photography, and was thinking of taking it pro. What equipment would be needed, my son inquired. There are not words adequate to describe the love and humility I felt at that moment. I will never forget the look of satisfaction on Sy’s face as we left the store with his purchases. Giving up was simply not an option, and the next day, camera in hand, Silas took the most exquisite photos of his dear friend Zack and Zack’s fiancée Kelly. Silas passed away just two days later, on May 27, 2008. 
This documentary is a testament to Sy’s ability to live life to the fullest, even in the most despairing of times. ~Lorraine Kerz, Sy’s mom~

from on .